The point of this community is to provide a space where you can ask questions, share your experience, support one another, and become better informed about lupus.
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Hi, this is such a brilliant site. I have had lupus for 8 years now along with shrinking lung syndrome and its so nice to listen about other people with the same things and understands what it's like. Could you tell me if their is a support group anywhere near me, I live in Haverhill Suffolk.
Hello everyone Im Frances from Manchester.Had sle for 20 years since our son was born.Traumatic birth both nearly lost.Hairloss early on tons of tests for ME .have been to groups and fundraising but don't feel able to do that at the moment.
Hi, I'm Sally from Hove and have only recently been diagnosed with SLE so am in early days of learning to live with this and adapting my life. I find it inspirational reading how positive so many of you are. Any advice or thoughts from anyone would be greatly appreciated. I'm seeing my rheumatologist again today & am grateful he recognised my symptoms fairly early although I'm finding it really tough at the moment and am very emotional. I have joined Lupus UK but if there is a support group in Sussex I would love to hear about it.
Hi Sallybolly. Welcome to the community, I hope you find it helpful.
Unfortunately there are no LUPUS UK groups in Sussex at the moment. I am aware of a group that meets in Brighton. They're not a part of LUPUS UK, but if you contact one of these ladies they can tell you more about their meetings;
Getting a lupus diagnosis can be frightening and bewildering. Get as much information as you can. This site is brilliant for advice and coping strategies.
There will be times when you are emotional and finding life a bit difficult, particularly at the beginning when you are trying different meds to see which are most suitable for you.
Eventually you will start to feel better and more able to cope.
Hi, I'm Carol and I'm from Chingford. I've been diagnosed with SLE from 1996. Lupus is such a very hard disease to live with but sites like this one helps make it easier to bare.
Hi Carolmac, There isn't a group in Chingford, but there is one in Edmonton, which isn't too far by the look of it. If you're able to make it to that I can provide you with more details?
Hi I'm Vicky,from London,I was diagnosed with sle ,rheumatoid Arthur and bad Raynaud's. Lost finger tips due to the Raynaud's, over the years added a few more, ie aps ,osteoporosis and more,been looking at this site for awhile and think its great ,knowing their is others who really understand what you're going through and get good advice. When I was diagnosed 1979, nobody knew or heard of sle, at least that's now changed
Hi Vicky. Welcome to the community. I'm pleased to hear that you think that site it great. I hope that you will get some benefit from being a part of it. If you need anything, please let me know.
Hi, I'm Lesley from Bury St Edmunds, Suffolk and am expecting a lupus diagnosis to be coming my way shortly.
I was suffering with joint and muscle pains three years ago, which developed while I was discovering I was also gluten and lactose intolerant. Back then I was given the diagnosis of fibromyalgia and kicked out of the drs office with a leaflet and left to it.
At the start of Sept this year I had routine blood tests due to increasing fatigue, which found I was stage four kidney failure with a reading of just 26. I had a kidney biopsy two weeks ago and see the nephritis specialist again tomorrow.
My husband was also at Addenbrookes on Friday and the vasculitis and lupus specialist said I had been referred to her.
Does anyone else have kidney involvement and how have you been treated meds wise?
Hi Lesley. Welcome to the community. I've got your private message, so I will respond to that now. I hope that you get some answers to your questions and find this a friendly and supportive environment. Please always feel free to contact me about anything.
Hi, I also have SLE, Rheumatoid Arthritis & etc. I have also had Kidney involvement, though up to now I have been a lot luckier than you, mine has always been restricted to really bad Kidney infections & which then always results in a flair that was how I lost the use of my hands. An extremely bad Kidney infection was the start of Lupus for me &i now get really frightened of having a flair each time I get one. The only medications I take for it is antibiotics and I have occaasional monitoring from the Rheumatogist& my GP
I hope that you can find someone else in the same situation as you to give you some support and they may be able to answer some of your questions that you feel the need to find out.
Hi there, I am a 47 yr old male, who after 3 years of problems ranging from night sweats, joint pain, fatigue etc. it seems I have been diagnosed with Lupus
Earlier this year one of my many blood tests came back with a (just) positive double strand DNA result. My Rhumey tells me it it almost certain I have lupus.
Hoping to find some male sufferers on the forum to discuss the illness with.
Medication wise, I am currently back on Hydroxy (had to stop for about 2 months due to suspected eye issues) and a reducing dose of pred. I also had a steroid injection just before Christmas but they don't seem to work for me.
Hi Mark, whilst in a minority, we do have a fair number of men with lupus on this site now for you to chat to.
LUPUS UK also has a couple of telephone contacts who are men, so if you'd like to speak to somebody else with lupus on the phone, let me know and I can provide you with their details.
If you need anything, let me know and I'll do my best to help.
I'm sorry to hear that you had a rough Christmas. Are things improving now?
There is a support group in the Plymouth area. If you go to the Devon and Cornwall lupus group website you can find contact details to get more information about where and when they meet. devonandcornwalllupusgroup....
Feeling a little better as I have basically done nothing for a week and am on a course of pred to try and help things along until the Hydroxy kicks in again. Also struggling mentally so have been in touch with my GP to arrange counselling.
I'm glad to hear that you're feeling a little better. I hope things continue to improve quickly for you. I'm glad to hear that you're seeking counselling. I hope that you find it helpful. Let us know how you get on.
Yes there is a group that meets regularly in Sheffield. Here is a link to their Facebook page, where you can find out about their upcoming meetings and contact them.
Hi Mark yes i'm a 47yr old male and just going through the 1st stages with all the different tests,i was told i had drug induced lupus due to being on high doses o'v medication over a long period of years, due to my dsDNA levels starting low at 30 they have shot up to 53 rapidly,so they say i'm on the verge of connective tissue disease,so there gunna do 1 more set of bloods check my levels then i start on different checks.
Myy name is Renee,from Milwaukee Wisconsin,I've been dealing with sle lupus 8 years,I have 7 kids,that don't understand all them grown and out of the house except one 13 yr old,I use to include them in on how I feel,but they seem not to care,nor help me,I shovel my own snow then be bedridden for a week or so,they don't ask questions,I cry all the time,I'm Lonely and sad and always in pain,everytime I drink liquor maybe once every two months it makes my pain worst,especially in my chest.i wish sometime that I would die for a day and come back so I can see if they really can live without me.one more thing,I get sick in the sun,and I hate going outside period.
Hi Renee. I'm really sorry to hear that your children don't understand and appreciate your condition. Do you have any close friends that you are able to confide in and that can offer you support?
Renee, so sorry you are feeling this way Yes me to on odd occasions I drink to excess and cant stop. It is so bad for us to drink healthy or not. Deep depression sets in as alcohol is a depressant. A few months ago I felt exactly like you suicidal my mind told me to take 36 paracetamol which I did on top of this I was drinking whiskey. I text my friend a church leader who came down. He convinced me to go to hospital the ambulance was there waiting to take me. I realised they were trying to help me to support me. I went. Psychiatrists, nurses, other patients it felt wonderful to have kind people around me only wanting to support me. Once my wretching had subsided and I started to eat/feel weller the hospital stay felt like a holiday. I live alone I isolate myself for weeks at a time. I will now never allow my subconscious to rule my thoughts and actions. I have began on a better journey I tell myself to not listen to negativity turn it around to positive thoughts. with practise I am learning to live a better life now. I even think I love myself more than ever. god Bless and do stop drinking.
Hey Renee, I'm sorry to hear how you are feeling, I just wanted to say if you ever need to talk to anyone you can message me. Any time any day. I have a 13 year old son so I can relate a little. It is very lonely trying to deal with things on your own so please I'm here if you need a friend. X
Hi all, its nice to be back here , not been online for a few years... in which health has progressivly got worse so its good to be with people whom know how i feel,,,, thanx Mo..
Hi mojo. Welcome back to the community. I'm sorry to hear that your health has been deteriorating. Does your consultant have any plans on how to improve things?
Hi feel a bit strange signing in ,never posted anything before but here goes ever felt you were going mad you look good feel crap ,exhausted can't walk up stairs consultant treating me for lupus but not sure I have it fell ill 3 years ago spent 24 hours in hospital stupidly insisted on going home had a daughter sitting A levels and didn't want her to worry was treated for reactive arthritis for 12 months then rheumatoid for another 12 months then they found lupus antibodies in blood hair loss raynoids the list goes on been off work for approx 3 weeks with breathing difficulties had ECG , blood test , and chest X-ray last week but they all seem to be coming back normal , not that I want them to tell me something bad but the G P thinks I am out of condition , the radiographer told me I looked like I was having an asthma attack and that I should go back and see her , which I did she made me feel like I was making a fuss and panicking how do you deal with people with no empathy well that's an opening statement where do I go from there.
Hi Shadows-walker. Welcome to the community. I apologise for the delay in responding to you, I've been on annual leave.
A diagnosis of lupus can be quite difficult because there are other conditions that have similar symptoms. A positive result for lupus antibodies is strong evidence that you may have lupus. How long have you been receiving treatment for lupus? Have you found it helps at all yet?
If you think it would be useful, I could send you one of our free information packs about lupus, which includes information on diagnosis and managing symptoms. If you'd like one, just send me a private message or email paul@lupusuk.org.uk with your name and address.
Thanks for reply GP was better with last saw her she has been on to consultant to see me sooner than March 5 the has signed me off for another month ,friends took me out for afternoon on Monday were worried I was getting low as am in house all the time on my own . Would be very greatfull for any information I can get on this condition looking back I think I have had this most of my life started with an arwful rash on my face at the age of 11 hair started to thin after recurring glandualar fever at 17 , told I had Gilbert's syndrome at 29 , and psysoris ( can't spell but I think you can get the meaning ) at 31,boughts of fatigue have plagued me all my life , picked for the first time in years after my marriage broke up lost weight took up sport kite flying and biking felt like a different woman then went to the dentist and everything went down hill in a matter of days .in answer to your question I have been treated for lupus since August was really feeling quite good fatigue went away till December but was starting to creep back just after Xmas which was a trifle stressful , I re homed a dog in July called shadow which I was walking quite well and enjoying ,then my son re homed a beagle called Murphy ,he has been living with me since November beagles don't like being left so I had to drive to Brighton which is 5 hours .so I digress . GP thinks dog a good idea . I will send my email as requested thank you for listening.and yes the meds were helping I couldn't walk round the park a year ago I just had problems with hills now I have trouble with my breathing on the level as well can't do to much energy levels are not brilliant.thank you for replying just feel very alone
Paul at my whits end been asking the dr for 3 months to test me for sj & this & hes dismissed me totally ignored the fact i asked 3 months been suffering with dry ear mouth ears & nose then i've got feet & ankle weakness very fatigue & suffer in pain with other things i've been recently getting rashes & 2 lymph nodes come up ,always drained & feeling rotten made me bed bond all these health issues any chance there is a private test i could book myself to see if i have any of these conditions been a living nightmare ov hell & fed up with not avin any diagnosis because my dr wants made me wait really need some advice if there is anything i can do 2 find out my own answers?
There isn't a single blood test which you could have to confirm a diagnosis - these types of conditions are complex and the diagnosis must be made using careful clinical judgement by assessing a wide range of blood tests, scans and gathering a detailed medical history.
There are private consultants that you could go to, but this can work out to be very expensive, especially if you need to pay for all the tests.
Has your doctor given a reason for refusing to test you? Could you try changing to a different doctor?
Hello. My name's Oyinda and I'm 21 years old. My interesting fact: my full name means 'honey wrapped up in joy.' I was diagnosed with S.L.E at just 11years old, along with Rheumatoid Arthritis. I have so many stories to tell, how long have you got? I'm lucky enough to have had a fantastic Rheum team at Great Ormond Street Hospital and now I'm again taken care of by Dr John Ioannou and the Rheum team at University College Hospital. Although I was lucky to have been diagnosed early; I have been unlucky in finding the right balance of medication to control my Lupus and reduce it's flares. I've been through a lot over these past few years in particular; but with the help of the infusion nurses, doctors and my Lupus nurse Nicola, I'm still managing to fight. I also have a fantastic family and a small but close network of friends that help me through the bad aswell as the good. Feel free to ask me any questions. (: xo
Hi Oyinda. Welcome to the community. I hope that you find it helpful. Fingers crossed that you find a good balance for your medication soon. You're certainly getting care from the best people possible. John and Nicola are lovely
It's so important to be inspired by your own lupus journey and to embrace the good and the bad days.
Please continue to be an inspiration to others who have a similar condition. I am learning that no one Lupus is the same but we can all try on our best days to apply some optimism, continue to find the balance with meds, embrace support from friends and family and have an empathy for those in crisis.
Your post was the best start I could have to my day.
Hello everyone, I joined this site quite some time ago & have written a couple of times, & replied to a few posts. I was dx with SLE & Sjogren's 15yrs ago, then dx with APS, RA, Osteoporosis, Osteoarthritis. Just before dx with Lupus I had 2 major strokes, then my Dr reffered me to St. Thomas where I saw Professor Hughes he was brilliant & got me dx & on meds in no time because of the amount of pain I was in! Over the yrs the hospital has gotten more & more busy & i've seen different specialists because of Professor Hughes leaving! I felt like I was being shoved to the back of the queue. Early last yr St. Thomas said that as I was seeing a rheumy that would discharge me & if needed my Dr could refer me back there, which is not really what I want, but don't want to be awkward. I do see a rheumy nr me but he only specializes in Sjogren's. I've been suffereing for yrs with ulcers/sores in my mouth, tongue &had a severe one 8yrs ago, had to see a maxilofacial & he cut it out to see if it was cancer & lucky t wasn't, but the wound has never healed properly & the other side of my tongue has a severe ulcer that has never cleared up! So my rheumy did nothing & my GP reffered me to a different maxil & he refered me to Guys who sent me for an ultra sound of my face & neck, which has turne out that both sides of my face are affected as is my neck & all of my glands are affected & now seeing someone to get the rest of the results on Wed, & to see what thy are going to do. But the problem I have is not having a lupus specialist & i'm wondering if anyone can pls help me? I don't know where I can find out about Lupus specialists as I live in Dartford in Kent. I do see a Derma now & i've not long been dx with Hyperparthyroidism & take extra Vit D. I had stage 3 Breast cancer 5 yrs ago & had to have a radical mastectomy with radiotherapy for quite a few wks. But now regarding Lupus i've been having one flare after another & it never seems to stop. When my GP took bloods the ESR levels were only 21 & CPR were 8, which she said is fairly normal but I don't feel normal & I don't think she feels it's as bad as it is! I really don't want to seem a hyperchondriac & I really do try not to keep pestering but I just dont know where to go from here. I'm also wheelchair bound after my strokes & severe back problems. I've also been dx with Fibro. I'm so sorry to have gone on as much as this
I'm afraid I don't know a lupus specialist in Kent. I think that possibly the closest to you would be Professor Isenberg's lupus unit at UCLH. It may be worth asking for a referral there if you are able to travel into London still.
I just joined and have to say that I have found more answers to my disease here than I have gotten from my 10 doctors I have seen for the last 5 years.
Thank you all so very much, you have helped me more than you could ever know.
Hi sleepee1. Welcome to the community. I'm pleased to hear that you've found the site helpful so far. I hope that it will continue to be a useful resource for information and support. If you need anything, let me know
I can definitely relate to your post!! This community is fantastic & have helped me so much in the past several months than my doctors ever have. I'm glad to hear you have found the help you deserve here & continue too.
Hi there. I'm sam & I live in Swindon. I was diagnosed with SLE/ sjogrens 7 years ago in my first pregnancy. I have 2 little boys, am a single mum and just recently had to give up work. My lupus has not been in remission since diagnosed but I keep on smiling as much as I can.
Hi Samh, welcome to the forum. It is a valuable source of info for me, and I hope in time, you agree. Lucky for me, I was diagnosed when my kids were teenagers. I also had to stop working and have never been in remission. It must be very hard for you on your own. There are other members in the same situation as you, and I'm sure they will make themselves known to you in due course.
Hi I have had lupus for way too long now...about 16 years! In that time I don't think I ever really came to terms with my condition. I've had some very mild symptoms and some pretty horrific ones also. Kidney damage, intestine problems and the usual arthritis, rashes and severe fatigue. I work as a teacher (full time) and have two beautiful children. I once read that lupus burns out...just wondered why I'm still waiting... Are there many of us out there who work full time in high pressured jobs with lupus?
Hi Shine44. Welcome to the community. I hope you find the site helpful. For some people, when they go through the menopause they notice a decrease in the severity of lupus symptoms. A small amount of people with lupus can experience a remission of their symptoms for a period of time. Unfortunately there is no guarantee of this for anybody as lupus varies a lot between individuals.
I am a bit out of the loop with all the latest Lupus news, I used to volunteer in the 90's for the Herts and Beds Lupus group as secretary and young contact. Now I'm not so young and recently working full-time in a library job in London, although I love been finding it can be challenging but have a supportive manager and about to embark on a conversations on reasonable adjustments with Occupational Health to see how I can be best supported
I read in a previous post that Paul was currently producing two guides. One aimed at lupus patients that want to/ are able to work and one aimed at employers. Be great to get hold of these and have the right language to explain the challenges and limitations of living with Lupus.
Be good to be back in touch with support groups especially in London.
Welcome to the site. The guides that I mentioned are currently being printed and we're expecting delivery in the next week or so. I'll post details on how to get hold of them once they have arrived.
If you're interested in getting in touch with the Herts & Beds group, or the London groups, please let me know and I can provide you with contact details.
Hi sunset1994, don't worry about your blood transfusion. I have regular iron transfusions, and have have blood too. It is given by a canular needle to the back of the hand. Takes a while to transfuse, but also depends on how much you need. You go to a day unit and sit in lovely recliner chairs, so you are made very comfortable. There are plenty of others having all sorts of transfusions, including chemo. You should be offered drinks and biccys if you're lucky ! Your stats will be monitored throughout, and you may feel tired after. Sometimes towards the end of a transfusion, I get the taste of whatever I'm being given. Again this is normal. Good luck, I'm sure you won't need it.
I just wanted to say I think I red information that is confusing to me somtimes in lupus literature
(Or maybe it's just me).
I thought hydroxyclorquin was an immunosuppression from reading. NO IT IS ANTIMALARIAL not immunosuppressant. Therefore I do not have serious lupus, rather a mild case so far. My brain is messed up. Now the word "red" looks wrong . As in the past tense of read. I will think how stupid I was when I figure it out later. Oh well so it goes.
Hi miseryislupus. Welcome to the community, I'm pleased to hear that you love it. You are correct that Hydroxychloroquine is an antimalarial. It is very commonly used in the treatment of lupus and is in fact one of the only treatments which is actually licensed for lupus here in the UK. If you'd like to learn more about lupus medication you can read our factsheet here - lupusuk.org.uk/images/pdf/9...
I just read about Osgood-schlatters disease and attention deficient disorder being related to lupus.
Osgood- schlatters, also called knoby knees is pain on the anterior tibial spine of the proximal tibia. It is very painful if pressure is on that area. The area protrudes below the patella or knee cap. diane in usa
Hi djsema. Welcome to the community. I hope that you find the site a useful source of information and support. I will send you a private message with contact details for the Yorkshire Support Group, who will be able to tell you more about any meetings around the area.
Hello! I was diagnosed with SLE in 1997 after several years of puzzling symptoms. I live near Boston. (So I'm an uninvited Yank. Please forgive me for gate-crashing!)
For me, the hardest thing about living with lupus is the frequent disappointment, the way illness forces me to abandon goals and cancel plans without warning. I try to be thankful for the life I do have and the things I can still do, but I'm not very good at this. Perhaps sharing thoughts and stories with all of you will help me cultivate a happier, more wholesome outlook. I hope so, and I hope that I will be able to help you in return!
Welcome to the community. We have a reasonable number of members from the United States and you are very welcome to contribute here. I hope that you find the forum a useful source of support. Let me know if you need anything.
I was diagnosed 23 years ago but had SLE long before that. It manifested itself as very severe endometriosis and abscesses in my neck which refused to heal. I eventually had a total hysterectomy at 32 but that was just the beginning. The neck abscesses were thought to be TB and I was treated with TB drugs for 1 year. I didn't have TB - they were Lupus granulomas and no-one knew until I was properly diagnosed with SLE many years later. The abscesses infected my right lung and caused damage. Early removal of ovaries coupled with steroid treatment for Lupus was bound to result in osteoporosis. I was treated for that for 18 years but unfortunately no-one bothered to check my vitamin D levels which were too low to metabolise the drugs for osteoporosis (any one with a Lupus/ osteoporosis diagnosis should ask for a blood test to see what their vitamin D levels are) As a result I have severe damage to my spine and neck and have also developed osteoarthritis. I take vitamin D orally now and am on Denusonab. I have had every test in the book for the bowel problem that predates the endometriosis and have had 15 major surgeries for bowel obstruction. Five years ago I got lucky and met a distinguished SLE professor who realised I had a rare complication of Lupus- Pseudo Bowel Obstruction. I have taken Mycophenolate since then and so far have had no repetition. I have monthly blood tests to check that the drug isn't damaging kidneys/liver. My bowel has been badly damaged by Lupus nerve damage and as a result I have to use Peristeen Anal Irrigation daily. I am so grateful to have that as before I found it I was taking Pico lax and enemas daily. I have lost muscle in my legs and arms and find walking extremely difficult and very painful. I use a wheelchair and a mobility scooter if I go out. I have been diagnosed with Dystonia but prior to that diagnosis I was told that the problem was nerve damage from Lupus. My right hand and arm are practically useless - the fingers droop and I cant grasp or hold anything. I have had most of the drugs currently available for SLE including Cyclosporin B by infusion. That depressed my immune system so successfully that I developed malignant melanoma. Fortunately that was successfully excised. I am in pain somewhere or other most of the time and have episodes of acute pain that require heavy duty medication. I suffer from Sjogrens and my dry eyes are really annoying. Oh and I have been depressed to one degree or other for years. What do I think about Lupus? In my case it has been very challenging and life changing. What do I think about my care? Not a lot. There is no joined up thinking amongst medical professionals and again in my case it was just luck if I came across a doctor who could make connections. Are things improving? I don't see any evidence of that. Chronic illness is the Cinderella of the health service. There is decent care for acute problems where you are admitted by ambulance as I have been many times. After that its up to you to try to educate yourself as best you can with the help of Lupus Uk and other sources. My body has taken a battering and so have the people who love and care for me. On the plus side I have been able to help inquisitive young doctors and nurses who want to know about Lupus. They so rarely come across someone who has been diagnosed. I am happy to help and feel that I am an underused resource. I think that many more people actually have Lupus than are ever diagnosed and that situation is probably even more difficult to cope with than mine.
Hi Versailles. Welcome to the community. It certainly sounds like you've been very unfortunate in the care that you've received but I'm sure you have a wealth of experience that you can bring to this forum. You are correct that there is a big concern about the number of people living with lupus that are undiagnosed and the ongoing care for people with all manner of chronic health conditions needs vast improvements in many areas.
I was diagnosed with Lupus a year and a half ago. Apart from the onset of symptoms that led to my diagnosis, I had been relatively ok (not great but okish) until about two months ago. Now it just seems that I have pain all the time. The pain moves from one joint to the next - just bizarre! I also get a lot of swollen glands all over the place and more recently have been getting sore muscles and really sore throat. My symptons are worse in the evenings, it feels like my body shuts down and I hobble off to bed. I'm on plaquenil and have been on prednisone since before I was diagnosed. I have tried to come off the prednisone, but when I got down to 1or 2mg symptoms would start up again (and my weight is on the increase).
So I have a lot of questions, a lot of which already been asked on this site so it's been good browsing through.
hi every one I started having skin rashes/tiredness/blurred memory 14 months ago now. After blood tests etc, they confirmed it was Lupus 4th June. I have had 4 really bad flare ups been admitted to hospital 3 times in the past 4 months bleeding from my mouth/anus, and collapsing (low blood pressure) my memory almost disappeared I was worried I was in the first stages of dementia. Right being the woman that I am, I have spent hours trawling through the web to find alternative holistic (the whole spectrum) medicine as the traditional medication only suppresses the immune system. I don't want or need the long term side effects as even this could kill me eventually. I know with my attitude and determination I will do everything within my power to help my body regain it's health. It is mind, body, and soul which needs addressing as a whole. I have started cutting out dairy products, meat/fish, processed foods, chocolate, sugary drinks, fizzy drinks, There is a fantastic website on YouTube 'Foods that Kill' the presentation is an hour long and well worth watching be prepared to have a pen/paper to hand. Now I am going to start my own business educating Lupus sufferers only. There is little support systems in the U.K. apart from the traditional methods which are only guessing and using medication not designed for Lupus sufferers. If anyone wants my personal contact details as I am on a mission to help others My email is Christine.Froggatt@sky.com. it is easier to keep in touch on a more personal level and I will then know I am addressing the people who are interested rather than blogging here.
Hi, I'm Cindy in Canada. Lupus flaring and I'm frustrated, or was - great site! A super find on what had been feeling like a bad day. Needed a reminder I'm not alone, and the first few posts I read were people talking about the same weird issues that I struggle with. Diagnosed with SLE in 2005... Doing okay, managing day by day.
Welcome to the community. I'm glad that you are already finding the forum helpful and I hope you will continue to use it. Please let me know if you need anything.
Hi there everyone, I'm Gareth and have been living with SLE Lupus now for 2 years. It can only be said that it was a massive shock to my family and to myself to find I had this illness. I have found it hard adapting my lifestyle to cope with living with the illness, two children under the age of five and also our family pet all enjoyed an active fun days. Having spent 12 weeks over the summer of 2013 in hospital was a massive shock to the system, especially when I was originally only diagnosed with pneumonia. Things certainly spiralled out of control and had many of the doctors confused here in the North East. Luckily enough I love close to the Freeman Hospital and with a specialist Lupus nurse and good rheumatology doctor I was finally diagnosed. Although being on lifelong medication at 29 was not a plan I had envisaged especially since I hated taking paracetamol.
It has been a scary couple of years with plenty of flares and I still seem to bemuse the doctors now with how my bloods vary on a monthly basis.
Luckily enough my work has been brilliant and very accommodating with my current role although I still don't like being off ill, sometimes its better to learn to listen to my body rather than my head as it tends to win in any case.
My family and friends have been unbelievably caring and supportive as they learn to cope with the disease as much as I have. Its hard to think of how much this awful illness affects so many, people talk about the pond ripple effect, and this is so true.
Try not to think you are alone in fighting your daily battle, people will listen, they do care and will help!
If you would like more information about lupus I would be happy to send you one of our free packs. Just send me a private message or email paul@lupusuk.org.uk with your name and address. I'd also be happy to provide you with details of your closest support group and telephone contact so that you can chat to other people with lupus.
Hello, my name is Christine, I am 19 years old. I was diagnosed with SLE last year, but noticed symptoms like hair loss and weird spots on my skin since October of 2013, but thought it was just due to stress because of my college application process. After going to the Dominican Republic for a service trip my skin really flared up and that's when I checked with the doctor and was diagnosed. I have moved back to Korea since then since my family was worried and my lupus has only been in remission for about four months now, but I'm very thankful for it because I used to have terrible joint and muscle pain and bloating. I was wondering if there was a separate group for younger lupus patients because I've noticed that most people who post or comment are in the older age group, and I feel like there would be different physical and emotional reactions due to body age. I am currently taking a year and a half off from college. I also want to ask if there is an english speaking lupus community in Korea since I'm not so good at the language. I've found this site and community very useful and really appreciate your help! Thank you for reading.
Welcome to the community. I'm glad that you have found that site useful and it's good to hear that you are experiencing a remission at the moment. We have a forum for young people with lupus, but in order to keep it a safe and secure environment we need to check the identity of those joining and at present we have no system to offer this to people outside of the UK. I'm sorry.
I'm afraid I don't know of any lupus communities in Korea. Have you tried looking on Facebook?
I know of lupus communities in Korea but their information is all in korean... I could just ask others with translating help though! I was just wondering if there were english speaking groups but since the foreigner population here isn't great already I would guess there would be even less english speaking lupus patients haha
I understand the necessity of checking identification, and I find this site helpful even without being in a separate young group already, so thank you so much for your time and response! have a great day~
Greetings from the U.S.! I've struggled with SLE and DM over the last 20 years ( lupus + dermatomyositis or a "mixed connective tissue disease") that began after my son was born. This site is a good place to discuss even technical aspects of autoimmune disease- something now gone with the loss of my last rheumatologist and my brilliant husband. I like the different perspective of this group. For instance, I haven't heard of "shrinking lung syndrome" in the U.S., but may have it since my lung volume and co2 stats dropped mysteriously-- forcing me, a former opera singer, to use home oxygen.
Though living longer than many with D.M. & SLE (I'd found a doctor with cutting edge treatments), I lost my dear 52-year old husband to esophageal cancer 4 years ago . He was misdiagnosed and under-treated at first too, but survived 9 years due to his faith and love for me and our son. We supported each other and no doubt increased each other's strength, so now I find myself going on with only faith, experience, desire to fight, and help others fight...I already admire so many people here!
I am completely new to this Site, only just being Diagnosed with Lupus (SLE), although I suffer with Fibro/ME/CFS, Elhers-Danlos-Syndrome, Recurrent Pneumonia, Shingles to name but a few!
I read your post, it really touched my heart! I am so dreadfully sorry to hear about the loss of your dear husband. Also all the problems you are experiencing with your health too!
I am a Christian myself & it is only my faith that has kept me going on so many occasions!
When I was in Intensive Care Unit the past two occasions, my husband was told that I was"nt expected to survive until the morning! I had Pneumonia, Sepsis, Respiratory Failure, Organ Failure, I was put on a Ventilator & spent a month in ICU! The Consultants/Anaesthetics/Nurses said it was an absolute "Miracle!" that I did survive!! I believe in Miracles and "The Power of Prayer!"
Sending you positive healing, comforting vibes your way.
Thank you for your Welcome to this Forum! I have just recently been Diagnosed with Lupus. (SLE) (last week!) after many years of all the Symptoms of Lupus. I also have Fibro, ME/CFS, Elhers-Danlos Syndrome, Internal Cystitis, Re-current Shingles (40+ times!!), COPD, Pulmonary Embolism (on Waufrin for life!), Asthma, Lactose intolerance, IBS, Re-current UTI"s, Lung Infections/Pleurisy, several collapsed lungs (due to EDS!), Osteoporosis, Kidney/bladder disease, 3 slipped discs spine, scoliosis spine, Pneumonia, Septicaemia, Respiratory Failure, Organ Failure, spent a month in Intensive Care, only to be told it is a Miracle that I survived, as my husband & sons were called to ICU to be told that I was"nt expected to make it to the morning!!
Finally after seeing an Immunologist after being admitted yet again with Chronic Pneumonia, sepsis ect. last year, a Consultant referred me to an Immunologist! I have had 5 Batches of Immunology Bloods & last week showed positive to Lupus! Although I don"t understand as they wish to repeat Blood Tests again in 12 weeks time?? Even though the Immunologist has added a firm Diagnosis of Lupus (SLE) to the list of my other Syndromes/illnesses!
Initially when I saw the Immunologist he did mention Lupus, as I had a rash & severe swelling over every Joint with chronic Joint Pain! I am under care of Rheumatologist for EDS. I also suffer with severe anxiety neurosis, Panic attacks, severe depression, chronic OCD & AN! Also had 2 "Nervous Breakdowns in the past!
I am currently suffering with yet another bout of severe Shingles & feel at my wits end!
I have heard just how difficult it is to have a Diagnosis of Lupus but as strange as it sounds I am praying this is a Final Diagnosis of Lupus? As it would certainly explain just how ill I am feeling & what has been happening to me for such a long time! I have been house-bound for the past 4 years! My weight has dropped dramatically, it is as much as I can do is shower & dry my hair of a day, as I feel so weak! I Live in PJ"s!!!
My lovely husband was advised to give up a brilliant job with salary to match almost 8 years ago now, which he did immediately! All my illnesses effect the whole of my loving family! We also have our eldest son Disabled in a Wheelchair with Progressive, rare, incurable, genetic, fatal syndromes/Dystrophy too!
Also I joined this Lupus Forum via another Forum I am a Member of & I was hoping someone could help me, as how to change my "Users-name & Logo" for this particular Site?!!
Apologies for such a long post, many thanks for listening!
I hope & pray everyone on this site coping as well as can be expected?
Sending you all positive, healing, comforting vibes
Welcome to our community. It is normal to have blood tests repeated after 12 weeks. This is to confirm that the presence of any antibodies isn't linked to a virus and that they are generally elevated in your blood.
You can change your username by going to the top of the page and clicking on the little arrow next your name and picture. You need to select 'account' from the menu and then go to the relevant box. You can change your picture by selecting 'profile' and then clicking the 'edit profile' button on the right hand side of the page.
I've been having lots of trouble getting to your post because my email doesn't link directly to it ( can anyone help with that?)
Lynn, after so many years, I know you are right in leaning on your faith to get you through. I saw my husband leave this earth after a long and loving marriage, and only faith could have given him the strength to get through years of cancer...Thank you for your precious remarks! Could I message you some how? As I said, this hasn't been easy to use,since my email just shows me what's happening here, but I have to then search for it on Google to reply? I just want to tell you what a dear and precious lady you are. It's no surprise your husband would quit work right away to help. I would love to have a word with you!
I am so deeply sorry to hear about the loss of your dearest husband, passing away with such a dreadful, insidious illness of Cancer! Thank the Lord he had his faith to carry him through not just the horrendous illness, but knowing he was leaving you, his loving wife behind him. What a very courageous, selfless man he must have been! I can"t begin to imagine how you feel after loosing him.
Please accept my deepest condolences and take comfort that he is no longer in agonising pain and I know he is watching over you.
If you are finding it difficult to message me, have you tried to PM me via this Site? This completely confidential when you "Private Message" someone & only the two recipients involved are able to see the Message, so you/we can say a lot more than we usually would on a General Reply to a Post?
Bless you for all your kind words you said to me. I feel very honoured for such a loving reply.
I would love to have a Pm off you for a chat, please feel free to PM me @ any time?
In my thoughts & prayers Annie
Sending positive, healing comforting vibes to you.
If you would like to send somebody a private message; click on their username and it will take you to their profile. On their profile, on the right hand side, is an orange button which says, 'send message'.
Sorry for late reply, been in the hospital all day! I"ll send you a PM to make it easier for you to just to reply to me. Then I can explain how you PM someone? I hope that is ok?
Many thanks Paul_Howard for your lovely warm welcome to this Site!
Also the information about the repeated 12 week Blood Test, as I am concerned/confused as my bloods have shown positive to Lupus on the past 3 "Batches of Blood Tests", plus some other elevated Tests of a very high Range! After many years of drastically high amounts of UTI"s, lost count of lung infections/Pleurisy. Plus I have had Pneumonia 4 times, (despite having the Pneumovax 3 times!) so severe the past twice, I ended up in Intensive Care Unit with Pneumonia, Septicaemia, Respiratory Failure, severely low Blood gases & BP! My organs started to shut down & I ended up on Life-support Machine! I was in there for over a month!
I am currently suffering from Shingles of my spine, which have become Infected, once again! This is my approx 50th Bout of Shingles!!! (Despite taking Anti-viral tabs daily to try & prevent them returning!). I honestly don"t think people believe me when I say how many times I have had shingles! Although the Immunologist was very empathetic & did"nt seem phased by the amounts of Bouts of Shingles! I also have Fibro/ME/CFS, Elhers Danlos Syndrome which are all related to severe chronic joint pain!
As mad as it sounds I was quite relieved to finally get an answer being Diagnosed with Lupus! Just worried now that if this next one proves to be negative, they will say I hav"nt got Lupus! Although on the Letter off my Immunologist he has added Lupus (SLE) positive (the last 3 dates, March 2015 being last one) to the List of my many other Syndromes/Illnesses/Dystrophy ect. I just hope this is a final diagnosis, as it does explain why I feel so ill and all severe Infections, practically living on Antibiotics, also answers the question of repeated Shingles, Pneumonia ect. & hopefully put me on the right route re Medications for Lupus, to help me claim my life back to some sort of degree, I hav"nt even been able to drive for past 4 years & hate being so dependant on my lovely husband & sons!!
Many thanks too for your helpful guidance of how to change my Users-name! I am rather Techno-phobic (useless on Computers!) but I shall certainly give it a try!
I hope you are feeling as well as can be expected. I also hope to bump into you on this very helpful Site again. Although I"ve read up on Lupus this is all completely new to me @ the moment but grateful for your support, kindness & help!
Hi im Rita from Watford Herts. Was diagnosed March this year with Lupus I'm waiting for a full diagnoses at the moment. I'm trying to find people in or near my area to chat to or meet up with to chat about lupus and comfort each other.
Hi Rita. Welcome to the community. Please let me know if you would like some more information about lupus and how it is diagnosed. We have a free info pack that I would be happy to send. Just send me a private message or email paul@lupusuk.org.uk with your name and address if you'd like one.
There is a Herts and Beds lupus support group which is run by a lady called Hazel who lives in Watford herself. You can email her for more information at hazel.wood1@gmail.com
Hi Just joined and I seem to have a lot to read about on the site and contributed by so many others. I am have recently been diagnosed with subacute cutaneous lupis erythematosus and Sjogrens Syndrome both of which I am trying to understand and pronounce.
Following a long period of waiting to see a Rheumatologist and at last diagnosed and recommended various medications and then informed 'stay out of the sun, wear a wide brim hat and use sunblock and wait another 48 weeks to see a Dermatologist again. So have some research work ahead of me and some time away from my job this week to try to move forward to trying to understand all of this and what I need to do from here on. Been having some interesting Dracula references, hope it does not go on for years.
Welcome to the community. I hope that you find this site a useful resource for information and support. If you would like some further information about lupus, I would be happy to send you one of our free packs. Just send me a private message or email paul@lupusuk.org.uk with your name and address and I'll pop one in the post.
hi all. my name is Andrea and iv been told I likely have lupus sle. taking a while to take in and getting use to the difference it makes to ur body. A new thing iv noticed is my hips r very painful is this normal in lupus
Welcome to the community. I hope that you find this site a useful resource for information and support. Joint pain is a common symptom of lupus. Have you been prescribed any treatment at the moment? Are you having further tests done before they confirm a diagnosis?
If you'd like more information about lupus, I would be happy to send you one of our free information packs. Just send me a private message or email paul@lupusuk.org.uk with your name and address and I'll pop one in the post for you.
hi . I'm seeing the consultant every 4 weeks just now. They take bloods and xrays and try get my meds right . I'm on 75 mg of azathioprine 400mg hydroxychloroquine got my prednisone down to 12.5 and dihydrocodeine to help with pain. I took really no well in June last year with fluid in my heart and lungs really struggled to breathe and put on a ventilator and at 1st they though TB till blood results showed possible lupus in September. The heat and sun r now unbearable for me my joints r on fire and I'm usually so tired I really feel it hurts at times
Hi I'm Jo and even after being a nurse for thirty years I have found Lupus difficult to manage and keep track of at times. Like most people I was misdiagnosed with RA, for ten years in which time the Lupus had affected my brain, heart, joints,thyroid and I rattle when I walk due to medication. Keeping positive can be a struggle and having to give up work was the biggest blow. I would like to know of any groups near Benfleet Essex or others who are interested. Thanks.
Welcome to the site. I'm sorry to hear that it took so long to reach a correct diagnosis and that you have had to give up work as a result of your condition. I believe at present your nearest meetings are in Romford (2nd Sunday of each month from 1pm in Cafe Sorriso, in the Mercury Shopping Centre). If you are a member of LUPUS UK (lupusuk.org.uk/lupus-uk-sho... then you will be contacted in the near future as we plan to set up more meetings in Essex and will be enquiring about interest in different areas.
Hi All- I am a Lupi newbie. I love reading the site and am in absolute awe of you. I am in the process of a diagnosis-with the first one being GCA and PMR. I see an excellent Rheumy and have taken Steroids, aspirin and Calcichew since December last year. I have recently started taking Hydroxychloroquine and am waiting for it to kick in. Had a Steroid injection about two weeks ago as I was in unmanageable pain-and it has given me fantastic relief. I am an active 53year old, working full time and I am learning every day how to live life well with autoimmune which is more than likely Lupus. Thanks and I will keep reading and learning.
Welcome to the site. I'm pleased to hear that your recent steroid injection has helped a lot. I hope that you will find the hydroxychloroquine beneficial soon too. Let me know if you need anything.
Hi everyone, I'm Maria from Ramsgate in Kent. Just been diagnosed with Lupus to go with my growing collection (APS, Raynaud's, osteoarthritis, brain aneurysm, thyroid antibodies). I feel like I've had this for at least four years.. the APS, too, was around years before diagnosis. I'm guessing, in light of the myriad symptoms and the transience of some of them, this is fairly normal?!!!
Welcome to the site. I hope you find it a useful source of information and support.
Unfortunately it is fairly common for people to wait a number of years before they actually receive a lupus diagnosis for some of the reasons that you have mentioned.
If you need any more information about lupus, please feel free to send me a private message or email paul@lupusuk.org.uk with your name and address and I can put an information pack in the post for you.
Hi done this the wrong way round done a post without saying hello but I was upset. I have a new Rheumatologist who does not believe I have Lupus. I was diagnosed in 1980 and have gone through lots of experimental treatments as it was new then. I also was diagnosed with mixed connective tissue disease, being young I didn't ask if it was the same thing, and I still don't! This man told me that I had a marker in my blood for Lupus but it was quite low. I said that I hadn't had a flare up for a while and he said that was nothing to do with it. I could not produce massively swollen joints so that was that, after 35 years of all the symptoms, pain, chronic fatigue etc it seems that all the other Consultants over the years have been wrong and this horrible little man was right. I say horrible with good reason, last year i was admitted to hospital for emergency surgery to remove a disc from my neck which was impinging on my Spinal Cord. Out of courtesy because my records showed I had Lupus my surgeon informed this man i was on the ward. He came to see me, looked at my hands and said, "no swellings" and that he had seen my MRI and that in his opinion I did not need surgery, after the Spinal team had said if I didn't have it i could be paralised. Sorry for the ramble but I am left wondering what I have if anything that causes all the symptoms I have, butterfly rash included.
Welcome to the community. I am sorry to hear about the difficulty you have been experiencing regarding your diagnosis and the distress this has caused you. You mention that they have withdrawn the diagnosis of lupus, have they also withdrawn the diagnosis of mixed connective tissue disease?
Have you considered seeking a referral to a different consultant for a second opinion? Perhaps a lupus specialist? If you let me know what area you are in then I can provide you with names for any that may be closest to you?
We don't know any lupus specialists in Swansea. The specialist that we know in South Wales is in Cardiff. Dr Julian Nash at The University Hospital, Cardiff.
At last I've found you all had lupus for 20 years but have only been diagnosed for 2 years,I'm about to change my rum atoll consultant on advice of my GP,I have no skin pigment at all -gone blind in one eye due to very bad reaction to quil drug,now on steroids for the first time,OMG do I feel great,is this something you can stay on,this is the best I've felt in years ?also just been told I have angina,is this common ? It's great to meet you all,I have so many ?
Welcome to the community! I hope that you find it a useful source of information and support. I'm pleased to hear that you have responded well to the steroid treatment. What dose are you currently on? Generally steroids are avoided as a long term treatment because they can cause a lot of nasty side-effects. In some cases, if they are proving very effective some doctors may keep patients on a small maintenance dose of around 5mg.
I'm not sure how many people with lupus also have a diagnosis of angina I'm afraid. It could possibly be linked to the lupus, or completely separate.
Thanks for your comments, I'm due to see a Cardo in October , re steroids started on 30ml for 7 days refusing down each week, good news I've stopped smoking tow weeks now it's been hard but I do feel better for it.
23_molly...US...age 67...retired university faculty...have had autoimmune diseases incl Hashi's, Sjogren's, fibro, IBS, CFS, anemia, RA, etc., amounting to UCTD/MCTD and but for neg. ANA, SLE with minimal renal failure. Have been posting about hydroxychloroquine for 2.5 months. Still having difficulties with GI side effects, heartburn and low-grade nausea, though the drug has worked wonders. Had not introduced myself so, feeling more human, decided to do so mow. I am grateful to be in touch with the UK Lupus community. You are more frank and open, share informationmore generously and are more knowledgeable, than persons communicating in the States. It is my pleasure to be part of your group. What I learn from you is invaluable. Have traveled extensively in the UK so I am fluent in geography, NHS matters, etc. Happy to "know" you all.
Thanks for introducing yourself Molly. I'm glad that you feel your treatment is helping and that you've found this community a useful source of support.
I apologise for the delay in responding to you. I am just trying to catch up with things after two weeks of annual leave.
Welcome to our site. I would be happy to provide you with one of our free information packs about lupus. Just send me a private message or email paul@lupusuk.org.uk with your name and address.
Good luck at your appointment next month. Let us know how you get on.
Hello. My name is Roberta. I live in the United States. I was diagnosed with lupus two years ago. With each passing day, my health deteriorates more and more. But I keep fighting. I was told because I receive the maximum amount of Supplemental Security Income (SSI), that I am not eligible for Social Security Disability. They said this even though I worked for almost 10 years and I have enough points in the system. It's very frustrating. The SSI is because of my blindness, not because of the lupus. I've been blind my whole life, the lupus diagnosis didn't come until I was 44, although I knew 15 years prior that something was wrong with me.
Hi Roberta. Welcome to the community. I like your attitude of continuing to fight! I', sorry to hear that you have been told you are not eligible for Social Security Disability. Unfortunately, since we are based in the UK we don't have the expertise of the Social Security system over there to advise you. Have you tried contacting any disability groups/charities in the USA for advice?
Hello my name is Theodor I'm from Romania but I live in UK from January I have lupus for 8 years I have got many treatments with steroids (plaquienil& predninson) but the rash of my face is still here can someone recommend me a good doctor in London area? Thank you
Hi Theodor. Welcome to the community. There a quite a few excellent lupus specialists around London. The two main lupus centres are at Guys Hospital (the Louise Coote Lupus Clinic, headed by Prof. D'Cruz) and UCLH (headed by Prof. Isenberg).
Hello I'm currently in the process of being diagnosed with lupus and I have an Ige blood level high 202 I wonder if you could explain what this might mean
Hi Charmaynej, welcome to the community. I hope you find it a useful source of support and information. Do you need more information about lupus? I would be happy to send you one of our free packs. Just send me a private message or email paul@lupusuk.org.uk with your name and address.
Hi Rosie2015. Welcome to the site. I hope that it helps you get a better understanding of lupus. If you are looking for more information, would you like me to send you one of our free packs? Just send me a private message or email paul@lupusuk.org.uk with your name and address and I can put one in the post.
HI i am Alexandra, i was diagnosed DLE about two years ago, have hair loss and severe mouth ulcers, although i started treatment (Hydroxychloroquine) i have other symptoms, like dizziness all the time and my GP can not find a reason for that, im off work since july.
Hope i can find answers in this site, as i am struggling to understand all the symptoms, as much as the doctors are struggling to find what is wrong with me.
Also it would be helpful to know if i am entitled to claim any benefit, SSP in not enough to pay my bills!
Perhaps have a look at the PIP criteria online and see how many points you think you may score - this could help you to decide whether it may be worth applying or not.
Although I do not suffer with lupus, my mother has been suffering with it for a few years now and I am trying to help her in any way that I can. I have recently discovered this community and it's fantastic to see people coming together.
I am wondering if there are any support groups in Dorset that I can get my mother involved in to try and help her as she doesn't talk to anyone about it nor does she talk to myself about it. I am trying to help her find some comfort in any way that I can.
Welcome to the site. We do have support groups based in Dorset. If you take a look at their website you can find details about their meetings, events and volunteer Contacts. dorsetlupus.com/
Hi, I'm new here. I believe this is where I write to say I'm new. What brought me here is my numb fingertips. I noticed someone else with lupus had this problem. I have neuropathy in my arms, hands and feet that's being treated with gabapentin. The origin of that problem is arthritic pressure and herniated disc pressure on spinal nerves. I still get some breakthrough neuropathy.
I also have had lupus for 20 yrs. or so with no complaints. But this fingertip business is new. It feels like I have callouses or thimbles on the tips of my fingers! Does anyone else have this feeling and was it temporary? What did you do about it? I forgot to mention...I have psoriatic arthritis which affects my nails and can toughen up the skin at my nail tips. It may play a part in this, but usually on a couple of toes only. But you never know...
Hi all i was diagnosed with SLE 3 yrs ago and my whole life changed i lost many things incl my independence- i wanto know what support groups or advice is available in the city of london where i currently stay . I also need support with housing thxs
Welcome to the community, I hope that you find it a useful source of support and information. We have lupus support group meetings in North, East and South London, so I will send you contact details for each of these groups in a private message.
Have you approached social services for assistance with housing?
Hi my name is Lori and I got diagnosed with Lupus in 1998 I am now in a severe flare up and have multiple problems induced into this my question is can a patient die with this lupus there are days I don't want to wake up it I can feel it fighting the pain is unbearable I can feel it fighting the pain is unbearable I have times where I feel like I'm giving birth to a watermelon and yet I feel like I have a knife going from and up into the back of my neck I have confusion I can't think 90% of the time I have to write everything down or I forget I want to sleep I'm exhausted constantly I feel like I'm in a black spot with nowhere to go I don't eat well everytime I try to eat I throw up unless I just nibble I starter from now and then I just hurt I hurt and I've got sores everywhere the Sun would hit me my arms my chest my face wherever I'm exposed to the Sun I start getting these sores that are discoid lupus that is so embarrassing what do I do I'm on gabapentin 900 milligrams a day for the pain and don't seem to be helping anymore I got days that I don't want nobody around me I just stay in a corner in my room the only thing I have dead keeps me happy or someone come is my dog Harley is a rescue dog she has saved my life on more than one occasion it just this is hard to handle I need a doctor MD not a RNP while they are in peace is very respectful I don't think she knows a lot about the Lupus I just wish I had someone else there that I can talk to I really feel all alone
I'm sorry to hear that you are struggling so much with your symptoms at the moment. To answer your question; yes, in some very rare cases lupus can have fatal consequences. However, this is certainly not the majority and lupus is generally managed with treatment.
Are you on any treatment for your lupus at the moment? Are you not currently being seen by a rheumatologist?
Hello all. I'm new to the lupus community. My name is Ngozi. I am diagnosed with SLE officially since May 2015. Meanwhile all signs were there for over 10yrs. Nevertheless I didn't have any treatment.
Now on cocktail of medications that I can't really see any effect yet. As I am still very tired everyday, I don't want to do anything. I'm forgetting things a lot.
Welcome to the site. I hope that you find it a useful resource for support and information. Did you start on treatment back in May? What treatment are you currently taking?
If you require any information about lupus we have a free pack that you can request or download at lupusuk.org.uk/contact-us/
Hopefully in time you will reach a point where you are feeling able to return to work. When you do, you may find our booklet, 'I Want to Work - a self help guide for people with lupus' helpful. You can view it or download it from our website at lupusuk.org.uk/working-with...
Yes in May, I was given iv steroid and subsequently started with oral steroid afterwards. This was after weeks of different iv+oral+CVP line abx administration for severe pneumonia with bilateral pleural effusion and pericardial effusion.
I have since then been diagnosed with lupus nephritis after biopsy and lupus white matter changes in the brain. Pericardial effusion and plural effusion have now settled but I still have some lung shadows till present.
I was on Azathioprine from July 15 but that was stopped after a month on account of abnormal lfts. I was started on mycophenolate. There has been inconsistency with advise like stopping and reducing dose. Only on 8th January increased to1gm bd and also hydroxychloroquine 1 tab od started. Still on prednisolone 7.5mg od + adcal, Alendronic acid + Lansoprazole. Also thyroxine as had total thyroidectomy 2012.
I have lots of shakiness,anxiety, loss of confidence, poor memory on a daily basis so taking setraline and propranolol.
I have been through a lot.
Yes please I would like information pack on SLE.
How can you send it to me pls.Is it secure to post my address in this site.
I will keep on going and hope that my meds will relieve my symptoms eventually .
I have questions like does mycophenolate course anxiety in other pts ( is listed as one of the s/e) or is it down to lupus
I also have lots of dry eyes, again is it s/e of meds as it is listed.
You can download the information pack, or send off for one, from lupusuk.org/contact-us. If you would like one sent to you then I can enclose our factsheets about lupus and the brain and kidneys if you would like.
Regarding your questions about your medications causing anxiety or dry eyes, you should be able to find this information on the information booklet that you receive with each prescription. Dry eyes is a common symptom for people with lupus so it is also worth discussing this with your doctor as there is treatment for this.
If you send me a private message or email paul@lupusuk.org.uk with your name and address then I can put an information pack in the post for you and include a booklet about lupus and the skin.
You may want to ask your question about dry eyes in a post to the whole community to see what other patients find best? It may also be worth contacting the British Sjogren's Syndrome Association (BSSA) for their advice. Their website it bssa.uk.net/
Hi,iI was diagnosed with lupus just before Christmas. I have been prescribed hydroxy. How long does it take for them to kick in. I have constant pain in my legs,am struggling with work as I'm so tired and go from shivering cold to boiling hot in a matter of minutes. Starting to feel pretty low and venerable. Any tips would be appreciated
Hydroxychloroquine can take up to 3-6 months to kick in so keep going.
If you're interested, you can get a free information pack about lupus from lupusuk.org.uk/contact-us. Additionally, we've recenetly published an article with tips from users on here and on Facebook about fatigue which you might be interested in: lupusuk.org.uk/managing-fat...
Hi I'm marnie and I have been fighting for 4 years now to get answers to my son's health finally in October they took bloods at hospital from dermatologist so only 3 days ago we were called in to find out the results we were told in October it looks like porphyria but on Friday we were told it's border line lupus they haven't gave me any information at all and my son's only 6 they just said he's to start going to childrens hospital for sick kids in Glasgow so I hope we don't wait long all ice done all weekend is cry as I read up on lupus in children and I'm terrified for my son he's not been keeping well at all and he's so emotional and over sensitive it's hard as no one seems to understand he's a child and there's reasons to why he feels the way he does but he's been seeing speech and language a dietitian from a year and a half old the school said he's immature for his age and they called in an educational phycologist who thinks the same they were thinking he had autism but after getting told it's lupus and reading up on it it's answered so many questions I'm terrified tho I don't keep well myself as I had type one Diabetes along qith other health problems my daughter is 2 years old and she was diagnosed with laryngomalacia when she was born and had an operation last year so it's hard to cope with my own health and my kids but I want to see light at the end of the tunnel for my son and I need to get strong for him anytime which is alot when he gets stressed or upset by his sister taking his toy he cries and screams and I need him to be strong I don't no what to expect or what's going to happen to him and that's the scary part for me i don't want my baby to suffer anymore pain thwn he already has I joined lupus UK on Facebook and a few other pages on it and someone that has lupus from America looked it up and told me about this site which I think is great I hope someone can help me i would like to get in touch with other parents who's child suffers from this and what does it mean border line? Thank you
I responded to your messages on our Facebook page yesterday. I am in the middle of correspondence in the hope that I can put you in touch with another family who have a young child affected by lupus. You may also want to write your own post for this community to see if there are any other parents on here. Just click on the 'Write a post' button at the top of the page.
A diagnosis of 'borderline' lupus suggests that your son either had blood test results that are not strongly positive or that some clinical markers are present, but not others. These results may change over time, or it could mean that his lupus may be less active than some other people.
Hi. I'm starting to get worried now as I have my appointment for the neurologist on the 5th March which is good news but been having a lot of changes to my hands amongst other symptoms. My skin is getting really tight on my hands and swollen fingers with red puffiness just before my nail starts and after reading into my test results wich said a positive DNA titre of 1:640 with a centromere pattern I'm feeling scared as like many of you I'm not really sure what happens next. My chest pain has stopped now and hope it never returns. I guess what I'm trying to say is can it be possible for it not to point towards crest??
Welcome to the LUPUS UK community. I'm sorry that you're feeling worried at the moment.
Unfortunately, LUPUS UK aren't medical professionals so the best people to explain your test results are your doctors. I know that you were having some trouble with your Rheumatologist. Perhaps you could try giving the Neurologist a ring and ask him about some of your worries. Hopefully the Neurologist will be able to refer you to a new Rheumatologist fairly quickly, as that is likely the next step for you.
Do you think it would be possible to get checked out by your GP in the next couple of days just to set your mind at rest?
If you need any more information about lupus then you can request or download a free information pack from lupusuk.org.uk/contact-us.
Thank you for the welcoming note! I chose this community not because I'm diagnosed with Lupus, but because I have many symptoms of it; labs of +ANA, GFR indicates early stage 3 CKD. Rheumatologist diagnosed me with fibromyalgia and osteoarthritis. Dentist said I have lichen planus. So, I've got myself on all your appropriate community sites to stop progression of the issues I can. I'm searching for commonalities that may link to some other issue as well as the ideology of the CKD, due to the omission of Lupus by the rheumatologist.
I'd appreciate any feedback, and want others to know I'll assist those in any way I can, for the asking.
Welcome to the community jLiz. I'm sure that you will share many symptoms and experiences with other members so you can receive a lot of useful information and support. Were you tested for lupus? Are you receiving any treatment at the moment?
Hi!! Is so good to discover a place like this where we can all share our experiences and help each other. I am Chilean but I've been living in the UK for almost 1 year and a half so I am new in the system here. I have Lupus since I was 17, I am 32 now, and I've been diagnosed with Osteonecrosis or Avascular necrosis in my ankles and knees in the last months what It's been making me feel very overwhelmed and confused. I will get an Arthroscophy of my left ankle in the next months, still don't receive the date. I live in South West London, maybe someone in a similar situation to share our experiences or someone who had some advice? Thank you already!!!!
Welcome to the community. I hope you find it a useful source of support and information. I'm sorry to hear about your avascular necrosis. Good luck with the investigations. If you write a new post in the community then you will be likely to receive more responses from other members who have also experienced this.
Hi everyone! I'm a 38 year old (eldery, feel like 138) woman who's just had a diagnosis of Lupus.
I've had 2 children, both born very prematurely from pre- eclampsia. It was after my second the obstetrician ran bloods and diagnosed antiphospholipid syndrome, but my rheumatologist disputes that because I only have the positive lupus anticoagulant.
Anyway, I *think* I've had SLE for 8 years. I had a very ill couple of years with constant fever, kidney infection, was bedridden for 5months, severe fatigue, rashes etc. My (then) Dr decided I was probably depressed after getting married hahaha!!! What nonsense, I had the world's most laid back wedding and we have a great life together. What WAS depressing was not being listened to and being too ill to fight them.
I'm delighted to find this group. I hope to get to know you 😀
Hi WirLass and welcome to the community. I'm sorry that you've had such a rough time getting a diagnosis. You are entitled to a second opinion on the NHS, so if you disagree with your doctor then you can ask to be referred to a different rheumatologist for their opinion.
If you need some information about lupus then we have a free information pack available from lupusuk.org.uk/contact-us.
Hello everyone, I am Barbara and have had lupus for 8 years and sometimes I feel alone with this, and I often struggle to have someone to talk too about how I feel on a daily basic , it's so lovely to find this group and to share my fears with , and to offer help and to receive it too.😃👍
Welcome to the community. I'm glad that you have found this group and hope that it will be a useful source of support and information for you. If you are interested in meeting other people with lupus in your area, you can find more information about our Regional Support Groups at lupusuk.org.uk/regional-gro...
Hello, I am so glad that I found HealthUnlocked. I have been recently diagnosed with Lupus, and I don't know much about the disease. I am a retired teacher, and I love to knit and crochet. I try to play my old piano as best I can since I recently began lessons. I am happy to be here, and I hope to meet you all.
Welcome to the community. I hope that you find it a useful source of support and information. If you would like more information about lupus, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...
Yes I would like that's, just had the blood test came back negative but I do know it takes up to 7 years for it to be diagnosed and the 100% way to find out is by a skin biopsy , sure there must be other test?? Would love the pack sent to me if ok??
Hi Claire. Do you know what blood test you had done? Was it an ANA test? It can take a long time for people to get diagnosed with lupus, although this may often be because it is not considered as a diagnosis by many GPs for a long time.
A skin biopsy isn't a 100% accurate test for lupus. There are a few ways to test for lupus which can depend upon your symptoms. It is usually diagnosed with blood tests, but those with skin involvement may have a skin biopsy and those with suspected kidney involvement may have a kidney biopsy.
You can request the pack at lupusuk.org.uk/request-info... or by sending me a private message or emailing paul@lupusuk.org.uk with your name and address.
I hope that you find this site a useful source of support and information. If you need more information about lupus and how it is diagnosed we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...
Hi. I have a rheumy appt in a few weeks time and wondering what the future holds. I'm 46 and my health has been going down hill since the birth of my second child 14 years ago. In particular the last 4 years have been tough. I have a history of lots of allergies and food intolerance, gut problems, migraines. Possible coeliac, positive for lichen sclerosus for the past 12 years, serious issues with mood disorder in past 4 years. In the past 6 months I have had extreme exhaustion; joint pain in fingers, wrist, toes and feet swelling - much worse in the morning (I can't move my hands at all); generally feeling unwell with periodic fevers, UTIs, headaches, swollen lymph nodes, blood in stools, lichen sclerosus flares. My ANA is 1:640 and my CRP is positive. Any useful tips for how I should handle the rheumy appt?
Welcome to the community. I hope that your rheumatology appointment in a few weeks goes well. We have a booklet called 'A Short Guide to Lupus and Visiting your Doctor' which you can view and download at lupusuk.org.uk/wp-content/u... - It may have some helpful tips for you. If you haven't already, you may want to write a new post about this in the community too, so that other members can give you plenty of tips.
Welcome to the community. Whilst our charity and the majority of this community's members are based in the UK, we do have a large number of people from the US here too. Please feel welcome to participate.
Hi, I'v just signed up here, still finding my way round site, but it looks fab.
I am waiting for a Lupus diagnosis, after being seen by several different specialists, spine doctor, hip doctor, gastric doctor, gynae doctor, eventually seen last week by rheumatologist who said he suspects I have Lupus.
I had heard of it, but didn't really know what it was. I came home and researched Lupus online, now i'm pretty scared.
My symptoms started with upper abdo pain last summer, thought it was gallbladder, had ultrasound and told nothing wrong, continued with pain, kind of got used to it, then in December at work, my right hip started to hurt a lot, thought i'd pulled a muscle, gradually pain got so severe went to A+E at Christmas, had X-ray, told nothing wrong.
Pain got progressively worse. Started hurting lower back, knees, ankles, then hands. had to stay off work as walking was unbearable, my eyes also started to blur a lot, pins and needles in feet and hands, and patches on my face started appearing, kind of like a dark brown patch on cheeks and nose. Headaches were crippling too, had numerous appointments with GP, but told to take painkillers. Started to feel like a hypochondriac. Weird things were also happening, sometimes the side of my face would go into a kind of spasm, felt like everything shifted from right to left of my head, so weird I cant describe it without sounding silly.
Spine Doctor did a blood test, my vitamin D was so low it could not be measured.
Was given an injection and put on 2 weeks of high dose vit D.
Told this was probably causing bone pain but advised to see Rheumatologist.
Anyway, after months of waiting for appointment, Rheumatologist said he suspects Lupus.
Had another x=ray and lots of different blood tests, I dont understand any of these blood tests but really dreading the results now. MRI has been booked for June.
Also had results from CT scan 2 weeks ago, shows enlarged uterus, not sure whats causing that, got to wait to see gynaecologist, also had an endoscope procedure done 3 weeks ago, shows gastritis. Dont know if its all connected to this possible Lupus diagnosis.
Feel like life is at a standstill, i'm only 45 years old, but feel like 90.
In a year i'v gone from a healthy hard working professional, engaged to be married next year to my lovely Fiance, busy mum of 5, but now life has changed so much.
Just walking up and down stairs feels like i'v run a marathon.
So glad to have found this site, hope I see some positive stories and valuable advice.
Hi lou321 , welcome to the site. I hope that you find it a helpful resource for support and information. If you would like more information about lupus and how it is diagnosed (such as descriptions of the blood tests) you can request or download one of our free information packs from our website at lupusuk.org.uk/request-info...
I am Wakeem , 48 , and suffer with PNH. I have joined this site to learn more about my condition , share my experience and to help me feel , not alone . I realise this is not Lupus I have however all my Googling bring me back here as an avenue of support.
I have struggled with muscle complaints for around ten years, I initially suffered pins and needles and numbness in my hand, feet, and thighs. I struggle to keep an acceptable weight on, weighing around 61-62 kilo , BMI of 17. I had little or no goodness in my body and with all the worry, I was suffering extreme bouts of stress to the point of a break down ,
I have a fantastic consultant, a superbly understanding partner, and an employer who I feel may be waining in their support for me.
Some of my symptoms I feel are confused and may not be considered PNH.
I suffer with bad shoulders, aching cramps throughout my left arms, a weakened step, aching buttocks, involuntary jerks and movements, spasms , cramps and the odd ripple. However I can constantly feel like I have ripples, which could maybe deep rooted movements.
Night time when at rest and relaxing is when it is worse and I feel exhausted every morning.
Currently I am feeling quite depressed and anxious about my situations
I am sorry to hear that you are currently depressed and anxious about your situation. I hope that this community is able to provide you some helpful support and information.
I felt at the time that response from twitchy toes really helped me at that moment I found someone else who "knew" how I felt and that in its self was a massive help.
I am hoping to get a diagnosis in the next few months regarding lupus, I have suffered with fybromyalgia for the last five years and my health is really deterioting. My friend recommended this site and hope that I can understand the complexitites of lupus and get a diagnosis.
I'm sorry to hear that your health is deteriorating. I'm glad that you have found us and hope that we can provide some helpful information and support for your journey.
Have you had any tests for lupus yet?
If you need more information about lupus and how it is diagnosed, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...
Thank you so much for the information I am going to download it. I am just in the process of chasing up the results of some blood tests. If I need help I will come on the forums and ask.
My name is Lara I am 39 years old. I was diagnosed with Discoid lupus 3 years. I have much to ask as I have very little help truly understanding what I am going through. My mother has SLE however we don't speak often, as she is jealous that I am losing my hair (yes I know that's sounds terrible, but it is true and I accept her self centered ways, as I suspect it is a way her SLE has affected her mental state).
Anyway, I am from Canada and just moved across the country to be with my family (children and ex) and hope that this province may provide me with some help with what's going on in my body.
I love life, very passionate and believe attitude is everything. I hate what is going on and fully suspect that I will progress to SLE, yuck! But it will be what is meant to be
I am looking forward to asking many questions on here and hope to join others on their journey as well
Welcome to this community. I'm sure that you will get lots of helpful and informative responses to your questions from the supportive members we have here.
We have a booklet about skin involvement in lupus which may be of interest to you. You can view and download it from our website here - lupusuk.org.uk/wp-content/u...
We also have an article on our blog about hair loss in lupus which you may want to read - lupusuk.org.uk/coping-with-...
If you need anything at any time, please just let me know and I'll do my best to help.
Hello, I`m Les, a 74 year old g,grandad,after having been mis treated for rheumatoid arthritis for 3 years I was hospitalised before being diagnosed with lupus.
I am currently being treated with hyroxiquinaline ,prednisalone and myfenax
Hi Les. Welcome to the community forum. I hope that you find this a useful source of support and information. If you need anything, please let me know and I'll do my best to be of assistance.
If you require any information about lupus, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...
HI there. I have had SLE for 29 years. It took a while to diagnose and I have been on hydroxychloroquine for 25 years (no eye problems so far). I only recently realised how all the medical issues I have are SLE related despite having initially read a lot of literature about what was known (back then) about the condition. I have had really mixed care. A great consultant physician looked after me at Wythenshawe hospital in the mid nineties and then I moved to south wales and saw a really useless consultant for years. I was stable so there didn't seem to be much harm in the regular appointments and at least I was having my bloods monitored. However when I took a downturn he was completely hopeless. Afraid that I would be forced to stop work, I talked with my GP and went to see a specialist in another area (geographically) on her advice. She thought I would have to be a private patient but It turned out I was able to see him from then on with the NHS. He has been brilliant. I trust him. He responds to what I say. He listens. He acts. When I first had lupus I joined the local lupus UK group and I remember reading several tragic cases where people had received poor care or no care and even with long established diagnoses they got overlooked when they were in crisis. I was quite shocked...I remember one poor woman died. So my advice to anyone who feels they are not getting the care that they need is to explore all other possible avenues. If you are being ignored when you speak to your GP or health board then put things in writing. However, we also have to remember this is a weird condition (and often we have multiple mixed up auto immune conditions) and they simply don't have all the answers....BUT that isn't an excuse for them ignoring us or our questions and needs.
My symptoms include joints, skin, hair loss, ulcers, dry eyes, dry mouth, gastritis/reflux, anaemia, fatigue. I also have the return of childhood asthma but in an intractable non allergic form (no I didn't know such a thing existed either) . My ds DNA is on the up at present, symptoms on a bit of a flare and about to start prednisolone (low dose) having resisted for years and years. Till now 200mg hyroxy one day and 100mg the next and so on has been enough with pain killers (but I do so miss my co-proxamol and I am mad that they took it away from us). Have also had iron infusions, lacrilube and lumecare, saliveze, vitamin D, iron....there are a lot of simple things that can help a great deal. The asthma meds are a long and different story although I am sure the autoimmune states are related...both are now getting worse at same time.
So that's me or at least something of my lupus. I am one of the lucky ones but even for us it is quite something to deal with. Hope the info might help someone somewhere.
Thank you so much for sharing your experiences and your excellent advice to other members of this community.
I hope that the steroids help to bring your flare under control and that you are able to wean off again without much trouble. Keep us updated with how you are getting on.
Hi.. I am new and although I do not have lupus my husband was diagnosed last year. Does this disease spread quickly? It seems he is suddenly having more and more symptoms. His rheumatologist has put him on 3 different medications and all have shot his BP way up... he woke up this morning feeling nauseous and came home early almost in tears and barely walking saying his body was on fire and his face was numb... I am scared. He has no faith in doctors.. and is an old school tough cowboy. Any insight would be greatly appreciated since our dr says the bare minimum.
You need to find a lupus unit in your area. Where all the doctors speicalise in lupus and different kinds of lupus. Living with lupus must be hard for others. Watching you're love ones go down hill. But we do have good days more good once on correct meds. Being happy and not stressed I find helps me. Having the support of family and friends. Being understood when explaining where the pain is. Your husband will get through this and be ok. Once he's talking to the right people. I was 17 when was told I have lupus and I couldn't go out like my friends, was always the first to leave. Missed a lot of school due to sleeping most the day and not being able to move. But nearly 27 now and have my life is more together. Most of it is dealing with upstairs and knowning you won't let this beat you everyday! Some days you will need rest!
Lupus is a very complicated and varied condition which affects everybody differently, so for some they may develop a lot of different symptoms early on, others may develop symptoms more sporadically. Either way, in many cases symptoms are likely to come and go over time.
I'm sorry to hear that your husband is so unwell at the moment. Is he doing any better since you posted this? If his BP is very high then I would recommend speaking to his doctor to see what they recommend.
If you need more information about lupus, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...
Thank you for your response. He seems to be having better days at the moment, but had 3 days last week that he was down and couldn't hardly get out of the bed. I appreciate the responses I have gotten from everyone!
My name is Olivia from Surrey, I've had lupus since I was 14 but wasn't dignosed untill 17. I suffer from rashes on my feet and legs and triedness, catch everything going. Sore eyes and joint pains in my upper arms. It's primary shojgons I have. I am 12 weeks 4 days pregnant and very scarred of miscarriage as I did last October at 9 weeks. This time I feel the baby is stronger but it's always a worry. I am under London St Thomas currently as they have speicalist teams who care for pregnant lupus people. Been told I have to have special heart scans on the baby. Which is scary. My partner is supportive with the pregnancy, but he doesn't really understand lupus.
My mum is my rock! She understand my issues and problems I have on a daily basic. Mornings are the worse. And being out late! I hope I can meet someone in the same shoes.
Welcome to our community forum. Good luck with the pregnancy, are the consultants quite happy with how things are going at the moment? If you would like more information about lupus and pregnancy we have a free booklet that you can view and download at lupusuk.org.uk/wp-content/u...
We also have a booklet aimed at careers which may be helpful for your partner? It can be viewed here lupusuk.org.uk/wp-content/u... or if you want me to post a copy, just send me a private message or email paul@lupusuk.org.uk with your name and address.
Hello. I am just asking advise from other Lupus sufferers how often do you see a consultant? registrar? junior doctor? I have lots of issues with Lupus at present and I am very let down by my hospital, the Lupus nurses have no understanding and block me from seeing my consultant. I am most interested on how other Lupus Patients are treated before I take my grievance to PALS. Thank You.
I see that you've now posted this separately to the community and started to receive a lot of responses, so that's great. You'll find that the frequency of appointments will vary a lot between people depending upon their symptoms, severity, how well their lupus is controlled and how long ago they were diagnosed. Many people many see their consultant as frequently as every month or three months to start with and during bad flares, but then others may see theirs every six or 12 months after that.
How far apart are your appointments at the moment? Which hospital are you currently going to?
Hi Everyone , my name is Polly , I'm 45 , mum of a 10 year old boy . I ve been struggling health wise for over 2 years and just had lupus test done on Wednesday I'm feeling a little anxious , but at the stage of needing a diagnosis. 🤒
Welcome to the forum. Did your GP do the test or were you referred to a rheumatologist? I hope that you soon get an explanation for your health issues and a treatment plan that can help give you back some control.
If you need any more information about lupus or how it is diagnosed, you can request or download a free pack on our website at lupusuk.org.uk/contact-us/
I'm sure that you will find this community a great source of support and information
New here. I am Janet and have had Lupus for 40+ years with additional dx of Sjogren's, Reynaud's, Hashimoto's, and Shrinking Lung Syndrome. I try not to let SLE run my life and am active and travel a lot. I have had my share of flares, ailments, side effects, and hospital stays over the years. Lupus has proven to be a constant learning process in my life!
Welcome to the community. I hope that you find this site a useful source of support and information. I also look forward to the wealth of experience you'll be able to share with other members. Let me know if you need anything.
Hi l am Pauline l haven't asked questions before but l have being going to the doctors for about five years with my illness and the symptoms of this is much like lupus l keep trying different medications but don't work the doctors keep saying they don't know what. Is wrong with me l get same symptoms as lupus but the worse symyom is when l go into a deep sleep then when l am waking up l get a lot of presser in my head and. Pain and sometimes when l am in a deep sleep these things in my head won't let me wake up it keeps going on. And when l do wakeup it is still there l haven't he heard of any one else have this symptom l like to try to find out what it is because. I don't won't to live anymore with it l tried to take my life three times and l have told my husband and doctors l can't cope. With thi and. all the other things l have got l just like to die l am fed up with not knowing what l am going to wake up with l can't cope thank you Pauline my symptoms l very hard to explain
Hi Pauline. I'm sorry to hear that you are struggling so much with these symptoms and cannot get a diagnosis for the cause. Have you been referred to a neurologist for investigations and had scans such as an MRI?
Hi, I don't normally moan about my RA and SLE but this year has been awful. I've had a cold, really bad sickness bug and now had a cold bug going into 6 weeks, on antibiotics and had to stop my meds but its still not getting better. I keep having hot flushes which are awful and my pain is coming back, I'm also worried as I cant have my flu jab... I've tried extra Vit C and Olbas oil but feel so rough all the time, any suggestions please. Thanks in advance
I'm sorry to hear that you are really struggling to shift this cold. Have you tried going back to your doctor to see if they recommend a different antibiotic or other line of treatment?
Been back to doctors and diagnosed with a chest and sinus infection now, just wish they would realise we get ill like this and help sooner. Back on antibiotics Doxycycline, hope they get rid of this.
That's my next move as I'm going to have to miss my injection again this week,just cant seem to shift it. I'm hoping that I'm not going to be like this all winter with all the bugs that go round.
I am a female aged 72 who lives in the USA. For most of my life I've had allergy induced bronchial asthma, yet another form of immune system malfunction. Cured it through diet and lifestyle changes. No meds. Recently discovered strange, dusty brown oval patches on arms and legs. Usually never more than one at a time. No pain and not a bruise. Was afraid that I might have leukemia. Doc tested and found RA and sent me to a rheumatologist who did ANA test and stated low grade Sjorgrens. Next appointment in two weeks. Thanks for the support of this website! Since I have been sick for most of my life with asthma I have been very depressed, but this site has given me companionship. Once again, I feel I can fight this mystery thanks to all of you.
Hi 4373 , I'm really glad to hear that you have found this site helpful and a good source of support and companionship. I hope that it will continue to be a useful resource for you.
Hiya, my names Leah I'm 26 and I was diagnosed with Lupus (SLE) almost 6 years ago this winter. I'm new to this site and I thought it would be great for myself to get to know others with auto-immune conditions. It would be great to get tips and advice on how others deal with flare ups. I no longer feel isolated now I've been pointed to this site
Welcome to the site. I hope that you find it a useful source of support and information. If you create a new post and describe the symptoms you have trouble with during a flare, I am sure that other members will be able to share some of their tips with you.
I currently have autoimmune hypothyroidism, autoimmune urticaria, pcos and my blood tests have regularly come back as being 'within the average range'. However, I find that I'm losing hair by the bucket loads and am struggling to keep positive and have the energy to take on daily tasks in life. My fatigue is such that if I was to go to the gym (rare nowadays) or participate in physical activity, I am shattered for a few days afterwards and need to cancel all plans to recuperate. I went to the Dr yesterday and saw her face fall as she realised it was me again. However, she went through my medical history and wants me to be referred to Rheumatology as she thinks I may have lupus which they've struggled to identify. The trigger factor for he going down this path was that I always have cold hands and feet and one Dr years ago said I may have Renauds Syndrome.
My question is: have others experienced a nightmare in getting diagnosed? I'd love a family of my own one day but I'm petrified considering my complex medical history and if I do have Lupus, I'm scared of further complications to me or the baby- how have others coped? Am I being anxious when there's really not much to worry about?
I'd appreciate any input from others in how they're living their lives- the challenges and any positives of a lupus diagnosis.
Hi I'm 35 and have been struggling with health problems for what feels like forever . After many appointments with a local Rhumotologist I have now been referred to London Lupus centre and hoping I'm finally getting somewhere.
I'm sorry to hear that you have been struggling with your health for a long time. I hope that you get on well at the London Lupus Centre and they are able to progress to a diagnosis and treatment plan. Please keep us updated with how you get on.
If you need more information about lupus and how it is diagnosed, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...
Hi, I'm Kate (27yrs old) and I was diagnosed with Discoid Lupus Erythematosus (DLE) today after 2 years of misdiagnosed symptoms. I'm experiencing a range of issues with my skin, scalp, joints, muscles and hair loss. Rheumatology has started me on a 3 month trial of Prednisone and Hydroxychloroquine so fingers crossed that my body responds well. I'm still learning about Lupus so I'm sure I will find this community helpful in managing this disorder.
Welcome to the forum. I hope that you find the treatments helpful in controlling your symptoms. If you need more information about discoid lupus I would be happy to send you one of our free information packs. Just send me a private message or email paul@lupusuk.org.uk with your name and address.
I hope that you find this community a useful source of information and support.
Hi everyone, I'm Alison from Northern Ireland. After seeing a number of different consultants (3 of whom said I def had SLE & fibro) my local Rheumy disagreed and said I didn't have Sle! Despite a positive ANA dsDNA, high ESR & CRP. I'm hoping to hear from the experiences of those who are local and also learn how to cope from the experiences of other longstanding Lupies. I've lost my hair, eyebrows and am in pain daily. In the last 4 years I have only left the house to attend hospital and GP appointments. I find it all very difficult 😢
I'm sorry to hear that you are having difficulty getting a diagnosis. Have you asked your GP to refer you to a different rheumatologist for a second opinion?
If you would like to get in touch with the Northern Ireland Lupus Group and find out more about their meetings etc. you can find them through their website here - lupussupportgroupni.co.uk/
If you would like more information about lupus and how it is diagnosed, you can request or download one of our free packs at lupusuk.org.uk/request-info...
Thanks Paul.
I received a diagnosis after going for a second opinion, recommended by the rheumatologist who said I didn't have Lupus. I think he expected me to go local for the second opinion but I didn't. When I received a positive diagnosis from the 'second opinion' rheumie my local consultant was cross and refused to see me. I now have to travel and pay for any consultations which is difficult as I've lost my job (after 35 years) which is why my Lupus is not under control and I don't keep well - I don't always have money to attend more than once a year or every 18 months. Sometimes my pain is so bad I feel a burden to my husband and the guilt can be unbearable.
Hello, I could read all day long and not even get dressed!! It is so comforting to read other peoples posts and know I am not alone. I have not received a formal dx from any of my myriad of drs. No one seems to want to step out of their comfort zone.
I am 62 years old, US citizen and unable to work anymore. Heck--I am unable to walk, garden, zumba, anything! I end up paying for it for days if I dare. So I have just quit trying. The pain is too much. This is incredibly difficult for me as I have always been very physically active and independent.
So thanks for inviting me to belong. I will continue to read and study. With our wonderful obamacare I have lots of drs but no none to put it all together HA!!!
Welcome to the community. I'm glad that you have found it interesting so far. There is a real wealth of experience here, so I hope you find the forum a useful source of information and support.
Have you tried contacting the Lupus Foundation of America to see if they can recommend a lupus specialist near to you who could help you reach a diagnosis? Their website is lupus.org
Hi i'm pascale. I've been diagnose with sle since 5 month, but was awaiting this diagnostic coz my mum has dle and all my blood test were there to prove it right. By time im ok but yesterD I went on appointment, my doc added prednisone along with vitaminD calcium and azathioprine to my existing treatment(hcqs and asomex) I'm tired of taking all these medications. And as I lives in Mauritius island I'm forced to use sun screen all the time. I'm sooo tired and by time to time I'm like a woman of 90 yrs old(but im only 37). I'm a mother of a 17yrs old girl who help me in everything, my husband too help me, but I can feel that by time they are fed up of me. Adding to it that my daughter is doing her last year in college and she has to study hard and I'm helpless can't help her at all. She really want to go and study abroad, but with all my costy treament don't know if it will be possible and this stress me, and aggravate my situation. What im sure is that on this forum everyone can understand me. For all your support I thank you all.
And good luck to everyone who suffer just like me.
Welcome to the community forum. Thank you for sharing some of your experiences. I hope that you will find this site to be a useful resource for information and support. Keep us updated with how you are managing with your new treatments. I hope that they help to control your lupus.
Thank a lot Mr Paul, this forum really help me coz I've lots of questions which are being answered in it by sle patients. Wil let you know in two wks hw I react to my new treatment.
I am a 43 year old, SLE sufferer, diagnosed 5-6 years ago. Cant remember what it means to be pain free or when was the last time I felt healthy. I grew up in a family with immune disorders. So we all thought it was how people are supposed to feel. So it was normal to be ill but put aside the all the concerns. I had two strokes first being at 16 and the second 26. I look back and smile. Hence when my daughters started being unwell aged 10 and 11, I thought it was growing up pains, never assumed that they may both be ill. However my younger daughter was confirmed SLE two years ago when she turned 18. Because I was SLE, the moment we met her wonderful consultant at Royal Free, he did not delay her treatment. She was very much Lupus. I am ever grateful for this action. Mine took 5 years to get diagnosed. We were lucky. My older daughter is on her way to diagnosis, and she denies that she shows signs. She had two operations for tumours, has regular outbreak of ulcerative colitis and the famous bfly rash. Girls are now 20 and 22 years old. We fight with the big "L" every day. And we feel tired. So tired that only someone with SLE would know. The whole world use the word "tired", but nothing compares it to our word T_I_R_E_D. I decided to be a member of this site to meet and discuss our pain and find ways to cope with this pain. There is not a day go by that i don't take loads of painkillers. go to bed without a hot water bottle in the hope that I may wake up to feel a bit better to make it to work. Unfortunately, I look good. Therefore, I can't even make anyone believe how sick i am or the amount of pain i go through everyday. I wish there was a cure for all of us. Thank you for reading my post.
Hi everyone, I'm 35yrs old and was diagnosed with SLE 3 years ago. Since then I've had 2 babies 16 months apart and luckily the lupus was 'silent' so really didn't suffer much. But now it seems as though I can't get on top of things. My flares started when baby was 4 months and have been put on steroids on top of the hydoxychloroquine. Each time they try to wean me off the steroid I flare up. Each morning I feel like I've been hit by a bus. I cannot function without a hot shower, then I check which joints are swollen. My rheumatologist wants to put me on methotrexate but I'm a bit scared. I may have to because some days my hands are so swollen I can't pick up the babies.
It's nice to have found a group like this because I feel less alone because my friends and family don't fully understand what I'm going through and a lot of the times I have to be strong for their sake.
Congratulations on your two children! I imagine they are keeping you VERY busy!
What dose of steroids are you currently on? How quickly have you been attempting to wean off them? Sometimes if this is done too fast it can trigger a flare.
You may want to have a look at other posts about methotrexate in this community to see how other people have managed on it. You can do this by searching 'methotrexate' in the search box at the top
I'm glad that you have found this community for support and information. We look forward to hearing more from you.
Hello, I am Gabrielle. I am really happy to find this site as I feel so alone sometimes because people don't really understand Lupus SLE. I feel as if they think I am making up things. When I am flared up. My mother is about the only one that understands what I am going through.
I have just recently moved back to England and have lived abroad so long that I don't have any friends here yet. I have a lot of family in London but have moved to the northeast because it is a lot less money to live here.
Anyway I am happy to have found this websitemand a place where there are others tgat can relate.
Welcome to the forum, I am glad that you have found us. How have you found your move back to England? Are you registered with new doctors?
We do have a North East Lupus Support Group who you may wish to reach out to for making friends. You can learn more about them at northeastlupus.org.uk/
I am going to see a doctor in april at the RVI immunology clinic. I have seen a doctor in Hartlepool, a rheumatologist, who didn't seem to know much about SLE. I then pleaded with my GP to refer me to RVI for a second opinion.
That group sounds great. Thank you for the information and prompt response.😃
Thank you. and. I am new to the community.My name is Sylvia and I was first diagnosed with SLE 7 years ago.I was in denial and my health got worse and I had to accept it.Im trying to deal with all the. issues and pain and basically learning. how to take care. of my self.Im. grateful to have found this site..
Thank you all,I. am getting the medical attention I need.Thank you and test. confirms my diagnosis and finally getting some relief.When you are so much in pain and can't. do that much,this is. a very supportive sight to have..
Hi I'm Lynne from East Lothian in Scotland and have been diagnosed so far as being border line lupus. My symptoms started about a year ago with ankle joint pain and eyebrow hairloss. I haven't been seen by a rheumatologist yet but my GP is in touch with him and receiving guidance by email. I had positive ANA result and go back tomorrow for results of further tests for hiv and hep b. I'm told these need to be ruled out first of all. My symptoms are moving on quickly . On Friday I had what felt like acid rain sprinkling down my forehead and over my cheeks. It left a red dry rash but it's mostly faded now. What is most worrying now is I've developed a very sore neck at the back its now moving up into my head. My glands are swollen and I'm finding it hard to swallow. It feels like a bad head cold and paracetamol and ibuprofen are not touching it . I also wake during the night with numb pinky and 4th fingers on both hands only. This is very frightening and it's hard to be positive. Does this sound typical of lupus ? I'm scared I'm developing meningitis tbh. My husband also noticed the left side of my cheek twitching which I wasn't aware of. I'd be grateful for any advice or suggestions. Thanks you .
Unfortunately it is not really possible to say whether your symptoms sound typical of lupus, because there isn't really a 'typical' presentation for the disease. It varies a lot between people which symptoms they may experience.
If you want to hear more from other people with lupus about this particular symptoms, you could search previous posts for them individually and you could also do a new post in the community asking about them specifically.
If you need more information about lupus and how it is diagnosed, we have a free pack which you can request or download at lupusuk.org.uk/request-info...
Hi all, I was diagnosed with Lupus 11 years ago. I was 15 at the time, since then I have had 2 knee replacements and have been diagnosed with Marfans's Syndrome, I also have antiphospholipid antibody syndrome. I have been really well managed for the last 11 years and I have excellent doctors looking after me. I am worried just now as I think I am having my first flare since being diagnosed. I have been picking up more infections than normal (3 in 2 months), my joints are sore, I am fatigued all the time and I have dipped into depression. Am I right in thinking this is a flare? I have an appointment with my rheumatologist tomorrow thankfully but I am worried about what she is going to tell me. To make it even worse I have just had my letter through to apply for PIP and now I'm scared I'm going to lose my car which I desperately need.
I'm sorry to hear that you've been feeling unwell recently. It sounds as though you could be experiencing a flare, so it is good that you'll be seeing your rheumatologist tomorrow to discuss it with them. Let us know how you get on.
If you need some advice about your PIP claim, we have some guides which are available for members of LUPUS UK, you can read more about this at lupusuk.org.uk/benefits/
It is worth getting some expert assistance with your claim from your local council's Welfare Rights Advisor, or through your local Citizen's Advice Bureau.
Hi, I've just been diagnosed with MCTD and am feeling a bit overwhelmed to be honest. I think i'm lucky to have got my diagnosis quite quickly, but then I already have a couple of other autoimmune disorders so maybe I made it easy for them!
I originally joined Health Unlocked to get support from the Couch to 5k running group - this seems quite ironic now as i can't even walk down the road at the moment without becoming breathless! Oh well, such is life. Looking forward to getting support for this odd illness.
Welcome to the community. We have a factsheet about MCTD which you may find helpful. You can read and download it at lupusuk.org.uk/wp-content/u.... If you want a physical copy posted to you, just send me a private message or email paul@lupusuk.org.uk with your name and address.
Have you been started on any new treatment?
I hope that with time you are able to get your symptoms more under control and get involved with the Couch to 5K group again. We have any article about exercise and lupus which may be of interest - lupusuk.org.uk/lupus-and-ex...
I think any exercise is quite a long way off, but it's good to know that some people manage some and I will bear it in mind for the future as i try and stay positive.
Hi I'm Sophie, I'm 20 years old. I started getting symptoms of lupus at the age of 12, after years of struggling finally at the age of 19 I got an official diagnosis! I have been taking hydroxychloroquine for about 9 months and symptoms are ~kinda~ under control. So glad I came across this forum as it's nice to hear from people that know what you're experiencing
Welcome to the community forum, I'm glad you've found us. It's good to hear that the hydroxychloroquine seems to be helping.
In case you are interested, there is a group for young people (16-26) with lupus who meet in London every couple of months. You can find details of the next meeting at lupusuk.org.uk/lupus-in-you...
Hi, i was diagnosed with mctd 15 years ago at 15 (consultant now refers to it as rupus) so hopefully I'm welcome here, have been in remission for about five years on no medication and now flared up suddenly (wrist, ankle and lung). Trying for a baby which may have to come to a stop
You are of course very welcome here. I'm sorry to hear that you have just recently had a flare up. Was there anything that triggered it? Have you seen your consultant yet to discuss whether starting some treatment again may be right for you?
If you need more information about lupus and pregnancy, we have a booklet that you can read and download from our website at lupusuk.org.uk/wp-content/u...
I am diagnosed with all kind of auto-immune disorders. I am Vibha from Bangalore, India. 35 years of age. I got my first episode of clotting in the year 2010, when I miscarried my second unborn child, then dvt in 2011, then itp as well as lupus in 2013, and now brain stroke in 2017. Now they say I have hughes syndrome as well. Here in India doctors are confused I guess as the treatment they started me on was only ecosprin and hcqs and nothing for platelet and anticoagulation. Now I have got hold of very good doctors who took my case considerably and giving me acitrom-2mg and wysolone-60mg till my platelets are stable. I think only prayers can help me as these are hell lot of auto-immune disorders. I have changed my lifestyle a little bit, Now I am getting up early, going to temple for prayer everyday. Trying to excercise every day. Only thing can't control eating if I see something which is my favorite. I have 2 kids which means I love to cook for them. Any suggestions on how to control the desire for eating. I read all the posts here and able to connect with them. This tells me i am not alone. But I pray that we all get better soon.
I'm glad to hear that you have now found some good doctors who are treating you appropriately and that you are adding some more exercise into your lifestyle.
Perhaps you could create a new post to ask the other members what tips they may have for sticking to their diets. We wrote an article about diet and healthy eating for our blog recently too which may be of interest - lupusuk.org.uk/diet-and-hea...
Hi all, I've had lupus for 32 yrs now and my worst years were between when I was 18 -2yrs old. I have had heart attacks,squamous carcinoma twice and was left with lyphadema as well as all the other symptoms lupus bring with it, and I can honestly say that all the treatments and med over 32yrs the finest thing I have ever done to help myself was to start going to the gym. I started on a doctor's referal and it was the best thing for me.
Welcome to the LUPUS UK HealthUnlocked community. It is great to hear that you have had such a positive benefit from exercise. We look forward to further contributions from you in the community in the future.
Hello- my regular doc told me I have lupus and referred me to a rheumatologist-I went to the rheum appt and she wanted to repeat the lab work so she would know for sure- I'm so panicked I haven't gone back and haven't done the labs- I need support-I'm so scared to hear the diagnosis and have my life fall apart-I'm one of those who thinks if I stick my head in the sand then everything is ok-total denial,I know! My symptoms are painful finger joints and just the past 2 months I've been fighting oral thrush which also scares me-I just need to grit my teeth and go for all the testing 😬
Hello- ive had alot of problems with swollen painful finger joints for several years now- my regular doc did labwork which showed positive ANA - she told me i have lupus and sent me to rheumatologist- rheum said she wanted to repeat the labs to make sure of the diagnosis- i never went back, never got labwork cuz im in a panic! Im one of those people who sticks her head in the sand -im so very afraid to hear whats really going on with me- now im having oral thrush so REALLY panicking now! Ive scheduled and cancelled twice with rheum- feel paralyzed with fear because once doc tells me ive got lupus my life changes that moment- i really need support😬🙂
I apologise for the delay in responding to your message. I'm just catching up after a very busy period.
I can understand your anxiety about not wanting to have a diagnosis of lupus, but it really is best to get answers if you are unwell so that a treatment and management plan can be implemented if necessary. Do you have anyone who could come to the appointment with you for support?
Whilst a potential diagnosis of lupus can be scary because it is unpredictable, I would like to assure you that most people are able to manage it well with treatment now. It is also important to bear in mind that it presents differently in everyone so whilst you may see lists of all the possible symptoms from lupus, nobody develops all of these and some can be relatively rare. If you have been reading a lot online, it is important to stick to reliable information sites. There is a lot of incorrect, outdated or biased information online.
Perhaps it would be helpful for you to chat to someone else who has been living with lupus for a while? We have plenty of members here who you can chat to, but we also have support group meetings (find your nearest at lupusuk.org.uk/regional-gro... and trained volunteer telephone contacts. If you would like to be put in touch with a contact, please just send me a private message or email paul@lupusuk.org.uk and let me know what area you live in.
If you need more information about lupus and how it is diagnosed, you can request or download one of our free packs at lupusuk.org.uk/request-info...
Please keep us updated with how you are getting on and let me know if you need anything.
Thank u so so much- people on the site have already been so supportive- its amazing how fast people rally around someone who is struggling- i already feel better about going to the doc- thanks again😄
Hi, I've had a lupus SLE for 17 years based in Dundee. After the initial diagnosis and looking on google I immediately avoided any other research on the condition due to the scary contradictory messages. I've had a few different consultants over the years some good some indifferent same with my GP's. I only came across this forum recently and it's brilliant 😁 It's fantastic hearing the positive messages and the wise information that comes from the members. I don't have any words of wisdom except to say that in the past few years I'm beginning to take more control of my condition and beginning to be more assertive with the medical profession, I couldn't do this earlier on as I didn't have the confidence, but ultimately I know how the condition affects Me and that along with getting older means I tend to speak up. Just wanted to say it's great that people can come here for support and understanding.
I think you were wise to limit your online research because, as you say, there is unfortunately a lot of outdated, incorrect or biased information out there. If it best to stick with reputable sites.
I'm really glad that you like this forum and we look forward to hearing more from you. It's lovely to hear your positive message about being more assertive and having more confidence in managing your condition.
Welcome to the LUPUS UK community. Please feel free to share your own post to introduce yourself to everyone. I hope that you are able to benefit from the information and support available here.
Sjogren's syndrome and list can go on half the time never know if it's from one or the other but I don't let it beat me
Does any one have it were in the morning I wake up and some finger bent inwords and there stuck have to get partner to open then so stiff if holding anything for long time fingers get stuck
Does anyone know of something to help with my hands even texting is a struggle I have to stop and wait
I've given up with doctors they don't really help just give tablets or tell me something that Google says I know they do help alot of people just for myself they don't
And always feel they don't believe me as some test say postive and then negative
Welcome to the LUPUS UK community forum. I hope that you find this a helpful place for support and information.
You may wish to create a new post to ask the community about having stiff hands, you'll be likely to receive more responses that way. I am sure that this is a fairly common problem amongst people here and they may have some great tips for you.
I'm sorry to hear that you have given up on your doctors. Perhaps it would be worth asking your GP to refer you to a different rheumatology consultant so that you can see a lupus specialist who will have more experience with the disease? Depending where you are in Essex, your nearest lupus specialists are probably either at Addenbrooke's hospital in Cambridge or UCLH in London.
I'm talking to my doctor next week and will be asking them to test for Lupus. Can anyone advise me of what I should ask for. I have what looks like the malar rash reoccurring for years (but it was diagnosed as sebhorrheic dermatitis, despite not covering the nasolabeal folds and fitting all the signs of a malar rash, I find that a moisturiser from dermaologica helps with it but not all the time), fatigue, aches and pains (amitriptaline helps a bit), hands turn blue/purple in cold (holding a cold drink will hurt), IBS, GERD (on high dose esomaprozole), frequent urination, concentration and memory poor, sores up nose occasionally, mildly elevated liver enzymes on every blood test.
I realise it might not be Lupus but any advice on how to proceed and talk to the Doctor would be appreciated, as well as advice on whether the symptoms I've included would fit with your experiences of Lupus?
The symptoms that you have mentioned are generally common in lupus, although as you say, this may not be the only possible cause.
We have a blog article on our website which has loads of tips on preparing for appointments - lupusuk.org.uk/getting-the-...
If you need more information about the blood tests used in the diagnosis of lupus, you may want to take a look at our factsheet here - lupusuk.org.uk/wp-content/u...
Good luck with your appointment. Let us know how you get on.
Thanks Paul, I appreciate the help. I'm just a bit anxious as I've been having these symptoms for years (I'm now 41) and I'm finding it harder to cope with them. Thanks for the advice I'll check out the posts you've linked to.
hi I'm Amanda , a 45 year old Mum of 2 children aged 8 amd 12 from Stanford le hope in Essex. I work 4 days but feel really unwell and I'm going to see a new gp 2moro hoping she will carry out some tests. it feels good not to be alone as u often do feel .
I'm glad that you've found this site and hope that you benefit from the support and information available here.
Are your employers aware that you are being investigated for lupus? Have they made any adjustments to help you manage better in your role? Our guides about lupus and employment may be helpful for you. You can read and download them at lupusuk.org.uk/working-with...
they don't know. they are aware of a back problem and stiffness I've had since my son's birth 8 years ago. I thought it was the epidural as one gp said but now there are so many symptoms I don't feel it is just my back. I am worried to tell them as jobs are being made redundant and I need my job to pay my mortgage . my ex husband left 6 years ago when my children were aged 3 and 6 and got another woman pregnant so doing this alone has nearly killed me but I have strong will power and keep going for my children. Work have given me a chair with a pump in the back for lower back cushion but I don't know what else. I need less days per week working really , 2 or 3 long days rather than 2 long 2 short but run the office on my own at my site so there are no staff to cover. I will look at the guides though thank you , Amanda
Definitely have a look at the guides because it gives some information about your rights and when/how to discuss your condition with your employers. There is a lot of support available which could help you manage more easily.
I was diagnosed with sjogrens and Lupus SLE nearly 2 years ago. I've tried to carry on with life as normal but lately am finding the emotional side of that difficult. I'm not one to admit when I can't do things or feel too exhausted and really apart from my husband I think the rest of my family and friends think I'm just a little under the weather. I don't want to make a huge thing about saying I'm not ok but actually I'm not and maybe I need to admit that to myself If nothing else. I've also been guilty of not researching the condition and just taking the tablets I'm given without questioning how much they're helping and the side effects I think they're causing. I have two young children and am great at fighting their corner if they're unwell but when it comes to myself I'm terrible at pushing for things and I realise I need to change that. So my first positive step is signing up to this group..... and my first question after reading a few posts is about these "Lupus nurses" people are mentioning..... I don't have one, should I?
Welcome to the LUPUS UK community forum. I am glad to hear that you have pushed yourself to join and I hope that you find it helpful to share with others and learn more about your condition.
If you would like more information about lupus and LUPUS UK we have a free pack which you can request or download at lupusuk.org.uk/request-info...
Regarding your question about lupus nurses. Specialist lupus nurses are a part of some (generally larger) rheumatology departments in England, Wales and Scotland. These are generally funded by grants from LUPUS UK, but in some cases they may have been taken on permanently by the hospitals they work for. Not every rheumatology department has a specialist lupus nurse unfortunately, although we aim to continue funding new positions across the whole of the UK. In many departments you may have a specialist rheumatology nurse who will serve much of a similar role, but have less time to dedicate specifically for lupus patients.
Yes, we do have a North Wales Lupus Group. For more information about their meetings, please email the Group Chair, Karen Newby. Her email address is karennewby5@gmail.com
If you need any more information about lupus and LUPUS UK, you can request or download a free pack from our website at lupusuk.org.uk/request-info...
Hello my name is Martha, I am yet to see a rheumatologist, but since I was told about the Lupus, everything that didn't make sense like the shaking I sometimes get, makes sense now. Iam feeling very sad and depleted of all energy today
So Iam dreading tomorrow as I work in a college and am required to keep my energy levels high. Sorry to introduce myself on a tearful day
Do you have an appointment for the rheumatologist yet? Are you currently receiving any treatment to help alleviate your symptoms?
Do your employers know that you are currently experiencing health difficulties and undergoing investigations for lupus? Have they offered to make any adjustments to help you manage better in your role? If you would like some information about your rights in the workplace and support that is available, please take a look at our booklets here - lupusuk.org.uk/working-with... (if you need physical copies posted to you, please just send me a private message or email paul@lupusuk.org.uk with your name and address).
Fatigue is a very common symptom of lupus and unfortunately one of the most difficult ones to manage. We have a blog article about managing fatigue which may be of interest - lupusuk.org.uk/managing-fat...
I hope that you will find this site a helpful place for information and support. Please continue to share how you are getting on. If you would like to chat to other people through support group meetings or calling one of our trained volunteer telephone contacts, please let me know and I will be happy to provide you with more information.
I rang referrals and they told me that my letter had been sent though, he couldn't tell me when or what appointment date I'd been given. Thank you for the employment information unfortunately as I am a temp in a college I am not sure what rights I have realistically. But I will read through all the information what you sent. I have been unable to go to work since I sent my earlier message, I have to go tomorrow but feel such anxiety as I don't feel well enough yet. I'll be sure to read about managing fatigue, then hopefully I won't have to be the odd person asleep in the staff room every lunch time. Thank you for helping me on Monday I was at my lowest and had no where to turn thank you
I hope that you get your appointment soon. Please let us know how you get on. If you want any tips on preparing for the appointment, please have a look at our blog article here - lupusuk.org.uk/getting-the-...
Try not to push yourself too much if you are not ready to return to work yet because you don't want to trigger a flare by not pacing yourself.
Getting rests during lunch breaks can be a good way to help manage fatigue.
Hello =) , my name is Marilu from Mexico City, I was recently diagnosed with lupus last month, they say "I debuted" with the disease. I went from having nothing before, to swollen hands in September, to being hospitalized for problems urinating in October. As I did not have any defenses, I get nosocomial pneumonia and I had water in my lungs. Between the effects of the medications and what happened to me, I feel confused. This is an experience that for me has been frightening. I love life, animals, I am a psychotherapist, I am grateful for life and I hope to continue with it fully. Thanks for this space to share.
Welcome to the LUPUS UK community. I'm glad that you've found us and hope that you continue to benefit from sharing here. I'm sorry to hear that you are experiencing a confusing time at the moment.
If you need more information about lupus, all of our publications are free to read/download on our website at lupusuk.org.uk/publications/
Hi, I have been with Lupus for about 4 decades with waxes and veins. Now I am pleased to share my experience with others at this site. My experience of Lupus could lead to writing a book that I cannot afford to pay for its publication. I welcome any assistance in that regard. At the present, I reside in Iran.
Welcome to the LUPUS UK community forum. I hope that you find this a helpful place for support and information. Writing about your experiences to share them with others is a wonderful idea. I'm afraid we wouldn't be able to assist you with paying for a book to be published, but perhaps you could look at starting your own online blog?
Hello I was first diagnosed with lupus about twenty years ago but never had treatment I have been newly diagnosed about a year ago with treatment this time .i certainly do not wish anyone had this but I’m glad there is a place to come that other understand even when you don’t .
Welcome to the LUPUS UK community forum. Now that you have started treatment, have you noticed any improvement of your symptoms?
If you need any more information about lupus or LUPUS UK we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...
Hello, I'm Suzanne, 43 years old. I have narcolepsy with cataplexy, I've also been recently diagnosed with fibromyalgia in November 2017 after going back and forth to the GP complaining of widespread pain for the last 19 years. However, my symptoms seemed to have changed in the last year. I'm getting recurring swollen glands-every 6 to 8 weeks in the autumn to spring time. The last and worst flare-up was in October 2017 to November 2017. It started off with complete physical and mental exhaustion for 5 days, then a fever, swollen glands in neck, back of head and right groin, incredibly painful joints, especially all of right arm and hand, GP said shoulder was inflamed. I had carpal tunnel as well. My right leg below calf muscle was pulsating with pain. I was bedridden for two days. Full blood count showed no infection. Also for over a year, I've noticed tops of my arms have a mottled discolouration, sometimes purple in colour and always cold to the touch. I also get hot flush type problem. My cheeks, nose and chest go bright red and feel hot to the touch, sometimes accompanied with migraine. I also go bright red around neck and chest every time my glands swell or with sore throat. 3 weeks ago, I had a new symptom where my right hand and forearm went red and hot to the touch and very painful in my fingers and wrist but left arm and hand were normal colour. This lasted for about an hour. I'm now wondering if I have lupus. I'm getting over a nasty ear infection in both ears and my right eardrum is ruptured. My GP is stumped by my symptoms. Does it sound like lupus and what should do? I forgot to mention that I am losing hair on the sides and top of scalp, it's itchy and bumpy, and I'm making it worse by picking at the bumps causing scabs. I also get a lot of urine infections, migraines and during the oct-nov flare up, I had sores in my right nostril on the septum. That comes and goes as well.
Welcome to the LUPUS UK community forum. I hope that you will find this a helpful place for information and support.
I'm afraid we couldn't say whether you may have lupus or not because the symptoms are not necessarily exclusive to that condition. Has your GP done any blood tests looking for lupus or other autoimmune conditions? This would be a good place to start, followed by a referral to rheumatology. You can get more information and advice about getting a diagnosis of lupus in our blog article here - lupusuk.org.uk/getting-diag...
I'm not sure whether the sensation you mentioned in your fingers and wrist could be Raynaud's phenomenon? You can read more about this at lupusuk.org.uk/coping-with-...
Hello, I’m from the US but came across this site. I have not found a site that is so helpful as this one is.
I was diagnosed with sle in 2009. I’m 31 and have been struggling with pain management since my daughter was born 2 years ago. My Rhumey wants to put me on methotrexate but I am very skeptical. It has been a very tough journey these past 9 years but being on this site shows me I’m not alone.
Hi everyone ,have just found out that our grandson has lupus,,he has had all the tests and this is the outcome ,he is 21 and at university ,hope you don’t mind but I would like a bit of insight into this condition ,,I belong to HealthUnlocked for,, RLS and lung condition and have been a member for a few years so would love to hear from a few of you if you wouldn’t mind ,,will hopefully get him to join when he’s wrapped his head around this he has other problems as well and for him I think this could be the last straw although I hope I’m wrong in saying that ,thanks for reading Chris
If you would like more information about lupus and LUPUS UK, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info.... We also have our full range of publications available to view at lupusuk.org.uk/publications/.
If your grandson lives anywhere near London and would like to meet other people his age with lupus for support and information, we have a group that meets every couple of months. Details can be found at lupusuk.org.uk/lupus-in-you...
If you need anything else, please let me know and I will do my best to be of assistance.
My 16 year old daughter has been ill since September 2016 following an insect bite, she was a very bright, happy, healthy and active young girl. Ana negative neurophyschiatric SLE is suspected but no firm diagnosis yet. She suffers from a recurring all over head to toe rash which swells up each part of the body as it travels downwards, constant headache, memory loss, aphasia, difficulty speaking and understanding, slow processing, physcosis, aggression, hypomania, anxiety, hepatitis, swollen and bleeding lips, swollen lymph glands, stomach pain, vomiting, diarrhoea, brown and orange wee, incontinence or not going at all, swollen tongue, hair loss, strawberry tongue, difficulty eating and sleeping. She's had 3 relapses and intially treated with antibiotics, steroids, immunoglobulin, plasmatheresis, followed by rituximab then more immunoglobulin and rituximab in August 2017. She started Mycophenolate Mofetil in October 2017 but had another relapse in January and has spent most of this year in hospital. She's having further plasmatheresis at the moment following methlprednisolo in January 2018. Is there anyone who has similar symptoms on here? Consultants believe she has an autoimmune condition which affects the brain in particular, but no tests have been able to pinpoint which autoimmune condition she has. She's had oglioclonal bands and raised ESR twice but apart from that all scans are clear.
Was your daughter investigated for Lyme disease as well? I ask because you mention that an insect bite triggered this illness and Lyme is caused by tick bites and presents with very similar symptoms to lupus - nhs.uk/conditions/lyme-dise...
Has your daughter had the more specific autoantibody tests for lupus? I noticed you mentioned that her ANA was negative, but do you know if she has had an anti-dsDNA antibody test or an anti-Smith antibody test?
You may wish to create a new post in the community if you want to reach a wider audience and get more responses from other members who may have experience of similar symptoms.
Thank you. All tests for Lyme disease, lupus are negative, however, her neurology consultant is convinced she has neurophyschiatric SLE. Just finished plasmatheresis, cyclophosphamide being considered as next step. Already done post for the wider audience.
Sometimes lupus can present with no positive blood test results, although it is rare. In these cases it tends to be referred to as seronegative lupus. I hope that the cyclophosphamide helps to control your daughter's symptoms.
Hi, my name is Rachel Black. I am a middle aged ball of pain who happens to be a wife and Mother three times over. I have Ehlers Danlos Hypermobility, Fibromyalgia, Asthma, Sleep Apneoa and judging by recent tests, Lupus is about to be added to my list of woes. I am too I’ll to work, but I home educate my youngest. All three of my daughters have EDS. I like to read. Getting lost in a good book is often my salvation. I like to sing. I don’t get out often, but when I do, my ideal date is a good meal followed by a trip to the cinema.
That’s me in a nutshell. I look forward to sharing this excellent forum with everyone.🙂
Welcome to the LUPUS UK community forum. I hope that you will find this a helpful place for information and support. We look forward to chatting with you more. Thank you for introducing yourself.
Hi I have had lupus for 22 years since I was 8. Lupus first attacked my kidneys and I recieved a kidney transplant when I was 20. That was probably the hardest thing I have ever had to go through, but I have been doing good since. They say I will probably need another one by the time I'm in my late 40s but science only goes so far and then there is God!!! I have the occasional flares but I try to listen to my body and rest when I need rest!! I'm still learning from my body, because as I get older Lupus effects me differently!! I thank God because I am still here and still fighting!! Lupus does not define who I am, it makes me stronger because of it!! Lupus is just a speed bump in this wonderful life and I will never let it steal my joy!! I have my rough days but I am so thankful for my family and friends that make my bad days not so gloomy!! I am thankful for this site to be able to talk to people who understand what I go through physically, and emotionally on an everyday basis!! To anyone who reads this we are strong and we will get through whatever comes our way!!!
Thank you for sharing your experiences with us. It is great to hear that you have such a strong and positive attitude. I hope that you find this site a helpful place for information and support.
Hi, I appreciate finding this site . I am a 46 year old mom of 4 who has been undergoing intermittent testing for autoimmune disorders including lupus for the past 2 years after having a stroke then developing raynaulds. 2 weeks ago I developed my first rash/lesions/ markings on the back of my hairline and wait patiently for a rheumatology appt to discuss. The rash/markings are quite shockings and I am having a difficult time adjusting. I appreciate being on this site with others who are going through the same
Thankyou for welcoming me to the Lupus UK community !
I am already finding it really useful and have been talking to some lovely people who have given brilliant advice and shared their experiences. I am still awaiting a diagnosis but am awaiting an urgent rheumatology appointment due to my blood results and symptoms. Hopefully won’t be too long before I get seen,
I appreciated the welcome message and wanted to take a moment to follow the instruction regarding introducing myself to the community.
Like many on this journey, I am fairly new to the lupus/SLE diagnosis though I am not new to the symptoms. I was originally diagnosed with complicated adult asthma, followed by myasthenia gravis, followed by anxiety, followed by unknown. Now I have a laundry list of diagnoses that does included SLE.
Despite the challenges of the past few years, I will say that I have been blessed more than most. I am abundantly thankful for my current medical team and my personal support unit but they cannot offer firsthand experiences of what it is like to live this life. As the years, or even really days, progress so do the symptoms and another piece of the puzzle is unlocked. Because of that, I appreciate these forums to learn from others who
have walked a similar path and may be able to show a shortcut or just simply allow me to feel less “crazy” when a new symptom pops up.
If it’s ever thought that I can be of help to anyone, do not hesitate to reach out. Thanks!
Welcome to the LUPUS UK Community Forum and thank you for your lovely introduction. It is wonderful to have you joining us and I hope you find this a helpful place for information and support.
Welcome to the LUPUS UK Community Forum. I'm sorry to hear that your diagnosis is being doubted by your current medical team. Are you on treatment for lupus?
Joint pain, facial swelling & swelling in my “plaque psoriasis” spot after sun exposure, exhaustion after sun exposure, mental fog at times, the inability to put my thoughts into words (I’m a writer, so the last one is especially frustrating.)
These are all I can think of at the moment. Oh... and a consistently high white count, no matter how I’m feeling.
Hi Lakewolf . It is unusual to see a high white count in lupus - you would tend to see the opposite. Are any other possible causes of your symptoms being investigated?
Have you been seen by a rheumatologist with a specialist interest in lupus recently? If you are concerned that you are currently being misdiagnosed and your previous diagnosis of lupus is being ignored then it may be helpful to see someone who specialises in the condition and has more experience with less 'typical' cases. You could ask the Lupus Foundation of America to provide you with information about a specialist in your area. lupus.org/
Now that my visits at Hershey Med Center are free, I’ll be seeing all my doctors there. First order of business is my spine, as my ability to walk is being affected.
thank you for allowing me to join the group. My name is Kim and I am almost beside myself. For the past year I have been suffering with picking and burning skin. It feels like I am being bitten by fire ants. I have been treated for all kinds of parasites.... I have been on steroids and steroid creams, you name it I have done it. I can wash my bed clothes daily.... nothing is making any sense to me. None of my family members have any symptoms like I do.... I literally have sores that pop out that look like a scab. Just on my calves and shines. It will feel like a hot poker that jabs me. I have recently been diagnosed with Lupus.... I cannot sleep. I have this constantly. I am now 53 and I don't know how much more I can take of this ….. please help.
Welcome to the LUPUS UK Community Forum. I hope that you find this a helpful place for information and support.
Have you been started on any medications following your recent diagnosis of lupus? Perhaps hydroxychloroquine?
Do you find that there are any triggers for making your skin feel worse? Heat? UV exposure? We have an article about coping with itchy rashes which includes lots of tips from other people with lupus that you may find helpful - lupusuk.org.uk/coping-with-...
If you need more information about skin involvement in lupus we also have a booklet which you can read/download at lupusuk.org.uk/wp-content/u...
I'm Patricia, I've checked out your page on and off over the past 3 years. I am /was part of the PA community for years as I was diagnosed with Pernicious Anemia in 2015. I was dsDNA positive in 2015 and was pretty much fobbed off by more than 3 doctors,and I kinda put everything down to the B12 deficiency since..and the Injections have helped me tremendously. Anyway I have a new doctor now who repeated ALL my blood work an I am still Positive dsDNA (titer 1:640), she immediately referred be to a Rheumatologist .My appointment isn't until Sept 25th. I have been reading up a bit lately again and am convinced that I do in fact have Lupus. I am angry that I've had 3 years waiting around when the dsDNA is very specific for Lupus.I could have been more on top of things.Who knows .... they may still say it isn't Lupus (could they?)
I am happy I have a listening ear with you guys in the meantime
Good luck with the rheumatology appointment later this month. Please let us know how you get on.
You are correct that anti-dsDNA antibodies are highly specific to lupus and are rarely seen in people who don't have the disease. Their presence doesn't necessarily mean you definitely have lupus, but it certainly suggests that other tests and investigations should be carried out.
If you need any more information and advice about getting a diagnosis of lupus, please take a look at our article here - lupusuk.org.uk/getting-diag...
Hi. It’s just wonderful to have found a site that provides support to people diagnosed with lupus. I live in Portsmouth, and had recently been seen by a Rheumatology consultant and started on hydroxychloroquen and nifedipine 3 weeks ago. I had been suffering from auto-immune related diseases from a young age (hyperthyroid, terrible skin allergies, dry eyes and mouth, Raynaud syndrome). My fingers became more stiff and painful and the butterfly rash started to appear on my face which prompted me to see my GP, had several blood tests and was referred to see a rheumatologist. I have been reading about the disease and being told that there is strong probability that I have SLE is quite unsettling. It is like a 50/50 chance that I may or may not have the disease. My older sister had SLE and I have seen how much she struggled. She was diagnosed in 1997 when she was 29 and she passed away in 2002 whilst on holiday. It was very traumatic and unexpected. I feel very vulnerable both emotionally and physically this past few weeks and any source of information or maybe support groups near where I live will be very helpful.
I'm really glad that you have found the LUPUS UK Community Forum and I hope it will be a useful source of information and support for you. How have you been finding your medication so far? Do you have a follow-up consultation booked for a couple of months?
I can understand your concern about getting a diagnosis of lupus when you have such a close personal experience with the disease in the past - I am very sorry to hear about your sister. It is important to bear in mind that lupus presents differently in everyone and in the majority of cases it can be well managed with treatment and some lifestyle changes.
We do have a Hampshire support group, so I will send you a private message with some contact details so you can find out more about them.
If you need any more information about lupus and LUPUS UK we have a free pack which you can request/download from our website at lupusuk.org.uk/request-info.... We also have our full range of publications available to read/download at lupusuk.org.uk/publications/
Hi, I'm Abbie, I'm 26 and have been diagnosed with Lupus at the age of 20. I've been a very active out door person all my life, loved to travel a lot and hang out a lot but as I can't go out in the sun anymore it's taking a toll on my social life. I've secluded myself from everyone and prefer to sit locked up in my room than talking to anyone. I feel like nothing is happening in my life worth telling anyone so I exit all social media, and keep in touch only with a handful of people that are very close to me.
I have alopecia and growing hyper-pigmentation due to HCQs intake, I am very lean and do not gain weight easily. People make fun of me for these reasons and I find it so annoying. Even the once who know that I have lupus find it funny that I carry an umbrella everywhere I go, and comment on it . I feel like lashing out at all of them.
I would like to talk to someone about all these, but I feel that people find it difficult to take me seriously cause I look so well and decent from the outside, so they feel that I talk about this so much to seek attention.
Welcome to the LUPUS UK Community Forum and thank you for introducing yourself. I hope that this will be a place that you can share and get information and support from others who understand.
If you live anywhere near London you may be interested in our support group for young people (16-26) with lupus. You can find more details on our website at lupusuk.org.uk/lupus-in-you...
We do also have other groups around the country if you are not near London. You can find your nearest at lupusuk.org.uk/regional-gro...
If you'd like to chat to someone else with lupus on the phone, we have a network of trained volunteer contacts. If you'd like to be put in touch with someone, please just let me know.
If you need any more information about lupus and LUPUS UK we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...
Hi everyone. I posted in the main group but then came across this message.
I’m Gail and live in Manchester. I was first diagnosed with Lupus when I was 13. I’m now 43.
I’ve recently been seen by my rheumatologist as having a bit of a year with my health. I’ve had ongoing joint pain and pneumonia twice, alongside inflammation in my liver too. Just waiting for some physio to help build the muscles back in my legs as improve my mobility.
I have also lost a significant amount of hearing in the last 18 months and now have a severe hearing loss in both ears. I was registered Blind at age 4 also.
Over the years I have been lucky with my Lupus as it is very mild. Although sometimes it doesn’t feel very mild. Hehe. This last year I have been having more regular flare ups again.
My Raynards is playing up big time now with a change in our weather. Commuting to and from work requires lots of layers.
Looking forward to getting to know everyone on this forum. Is there a support group in Manchester?
Sorry for the delay in responding to your message. I've been in and out of the office a lot over the past few weeks so I have had limited time available on the forum. I'd like to welcome you to the LUPUS UK Community Forum. I hope that you are finding it helpful for information and support.
The cold weather is certainly starting to kick in which causes flares of Raynaud's for many of our members. We have an article with information and tips for coping with it which you may find helpful - lupusuk.org.uk/coping-with-...
We have a very active lupus support group in the North West which I recommend you get in touch with. You can learn more about them and contact them through their website at northwestlupus.org.uk/
Thanks so much for the welcome Paul and the information too. I really appreciate it. I’ve recently joined Lupus UK and have just received details of the North West group too.
Hi Paul and Everyone. So great that there’s a community for this. Why I haven’t found it previously is beyond me. I’ve had Systemic Lupus since I was 7 (am now 46) so I’ve grown up with the condition. But I’m always learning new things about it and myself. I see that most messages here are 5 years old so hopefully there are still people out there!
Welcome to the LUPUS UK Community Forum. I'm glad that you've found us and I hope you find this a helpful place for information and support. This 'welcome' post was done a long time ago, but if you go to the community homepage you will see that the site is very active with new posts every day. Please feel free to introduce yourself to everyone with your own post about yourself.
If you need any more information about LUPUS UK, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...
Hi, I'm "Nurse2",USA, I was diagnosed with Lupus and rheumatoid arthritis over 30 years ago. I took methotrexate, it didn't help me. When I have a really bad flare up, I will start taking prednisone 5mg for 5-7days and ween myself off and start a cleaning diet for several days. I also take organic sulfa(MSM) once a day & sometimes twice a day. I exercise 3-4 times a week which also helps my stiffness in my joints. I am not on any other prescribed medication and plan to keep it that way. I eat mostly fruits and vegetables. And lots of beans and fish. I love this site.
Welcome to the LUPUS UK Community Forum. I am glad to hear that you like the site.
Thank you for sharing your experiences. I'm sorry to hear that you didn't get on well with methotrexate. Did you ever try any other medications for lupus?
I'm glad that you seem to have found a regimen that is working for you.
Having had an awful few months in and out of hospital, my doctor thinks I have lupus. Blood tests are all coming back positive and symptoms seem to fit. Unfortunately it seems to have gone for my kidneys. Im waiting for my first rheumatologist appt in a few weeks and really struggling to get my head round it all. Hoping to learn a bit more from you all and ask questions if I can - I don’t know anyone with lupus to ask about all this. Anyway, thanks for reading.x
Hi Alice, so sorry to hear you’ve had such a bad few months and welcome to the forum. It’s a great place, very friendly and you’ll find lots of people cope very well and can have very normal lives once you get diagnosed, good care and treatment. Hopefully this bad few months will be your worst and you’ll feel much better soon.
If you have any questions it’s probably best to post them as a separate new post to this as this is an old one and not sure if as many people will read this.
Hope you feel much better soon and we are all here to support you through it xx
Welcome to the LUPUS UK Community Forum. I'm really pleased to see that you've already had quite a few helpful and supportive comments on your post from other members of the community.
Lupus can be a lot to get your head around, but I would advise that you don't try to take it all in at once. One of the things with lupus is that it is different for everyone, so you may read about loads of different symptoms and medications that you may never personally experience. Try to stick to reputable websites for information, such as here, the main LUPUS UK website, NHS and Versus Arthritis.
If you'd like any tips to help you prepare for your upcoming rheumatology appointment, please take a look at our article here - lupusuk.org.uk/getting-the-...
If you would like to learn more about lupus and the kidneys, we have a booklet which you can read/download at lupusuk.org.uk/wp-content/u...
If you need any more information about lupus and LUPUS UK, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...
Please keep us updated with how you are getting on and let us know if you need anything.
Hi Paul and everyone, I'm based in Ireland, but haven't been able to find any online fora. Lupus Ireland are quite good, though. In the process of getting a diagnosis (waiting to see rheum). This is great online site and resource - thank you!
Hi coisfarraige . Welcome to the LUPUS UK Community Forum. You'll see that we have members from every part of the world so you are most welcome to join in the conversation here. Good luck with your rheumatology appointment. If you need any tips on preparing for it we have an article here which might be helpful for you - lupusuk.org.uk/getting-the-...
Hi! I'm new to the site. I'm currently at work. A lot of my day is sitting around waiting on parts to arrive so I can clean them. I'm in a factory cleanroom. I prefer using my work tabletop computer over my home laptop. I have neck issues. Sitting up straight on my couch without exacerbating an already compromised neck is nearly impossible. That being said...if you don't hear back from me until a following work day this will be the reason why.
Welcome to the LUPUS UK Community Forum. I hope that you will find this site helpful for information and support. If you need anything, please let me know and I'll do my best to be of assistance.
What is shrinking lung syndrome. I have lupus now for years and i never heard of it, but i do have lung symptoms, seeming to get worse when weather changes. My MD. Dismisses them as allergies, copd , Azuma, etc. I would appreciate the information. Thank you, Kathy
I'm really sorry for taking so long to respond to your question. I haven't had much access to the site lately because of other responsibilities.
As far as I am aware Shrinking Lung Syndrome is a very rare complication of lupus with only a small number of cases ever reported. It is characterised by "unexplained dyspnea, a restrictive pattern on pulmonary function tests, and an elevated hemidiaphragm".
Is there any reason in particular that you think their suggestion of something like COPD could be wrong?
Hi Paul, thank you for getting back to me. Sorry I have been very unwell to answer you. And yes! I do believe the Dr's label of COPD could be wrong. On my last lung function test, the administrator of that test and I had a conversation about my symptoms and she advised me to talk with my Dr, about this shrinking lung syndrome. Because COPD can meld with other lung conditions she said and I did not show enlarged lungs and have a family history of pleurisy and other, lung conditions not brought on by smoking. My primary Dr, said my smoking a bit caused COPD. Yes it does, but my symptoms started a lot earlier in life, before I ever touched a smoke> Fast forward, I have lupus and all of these symptoms, wheezing, tight chest, cough, tired all the time, futige, raynauds syndrome, fingers turn red or blue at times, my feet swell, not all the time,trouble exhaling, stress, pain, NOH- pulmonary, I hold my breath without realising it, trouble sleeping,, and the list goes on. I do not do well on Prednisone at all. but it is the go to for all of this stuff. When I check my pulse on the oximeter ,I usually get normal rages (97_100. So what should I say to the Dr, please give me the information that would best direct the Dr. I greatly appreciate all the medical help you can give me, as I as the patient am at a loss. Dr's do not do a very good job of listening to there patients all the time, usually we get brushed off, and they stick to the books they know. Thank you very much for your time and care. peace blessings thestorm
I'm sorry thestorm , but I am not medically qualified and therefore cannot give you medical advice. I'm not able to comment about what the likely cause of your lung problems is.
With respect to your doctor not listening properly, we have an article on our website about getting the most from your appointments which may be worth a read? - lupusuk.org.uk/getting-the-...
Thank you Paul, I have been reading posts and finding them very helpful for the last couple of weeks. I was newly diagnosed with SLE three weeks ago at Chapel Allerton. I have posted a Newly Diagnosed message asking about the drug mycophenolate which I have been prescribed.
Lupus isn’t new to my family as my sister has it, years ago my family were asked to participate in research led by Dr Graham Cunningham at Hammersmith Hospital and Imperial College. They were researching genes for Lupus and came back to me a few years later asking for more blood for the next phase of research, they were excited about something called OX40 Ligand, I was overproducing auto antibodies for.
I had been struggling long before that to get some help, so it’s been a terrible long time coming. I don’t know how I would have coped without my caring supportive husband.
Welcome to the LUPUS UK Community Forum. I am sorry for the delay in responding to your message. I haven't had as much access to the site lately as I would have liked due to other responsibilities. Have you started the mycophenolate now? How are you getting on?
It is interesting to hear that you have been involved in some research about the genetic links to lupus. Thank you for taking part and helping to improve our understanding of the disease.
I'm really pleased to hear that you have a supportive husband who is there for you.
Thank you for your reply. I have been taking the mycophenolate for two months now, it was started the same day as the lupus diagnosis.
For the first few weeks I felt dreadful, I had an awful flare and was unsure whether it was down to the mycophenolate or because I had felt very stressed.
I had a 4 week follow-up appointment with the lupus nurse at Chapel Allerton who didn’t think the mycophenolate had caused it. Professor Emery increased it to a gram twice a day which I seem to be tolerating quite well. I have another appointment in a couple of weeks so hoping my bloods start to show some improvement.
I also saw Dr Beirne at Leeds chest clinic last week, he said now I have a lupus diagnosis everything else falls into place as previously they didn’t know what was causing the ILD. That mycophenolate is just the start, there are other options depending on my Lung function results. So I came away feeling more positive about the future.
It’s taken a great many years to finally get some help but I’ve been impressed with the chest consultants and rheumatologists at LGI and Chapel Allerton.
I'm really glad to hear that you seem to be getting somewhere with the teams at LGI and Chapel Allerton now. I hope that it continues and the medication alleviates your symptoms more.
Hi I am new to site, soo glad it exists. It seems many Drs here don’t know basic things. Like healing time after a surgery can be long, many foods are inflammatory such as the ‘Night Shades’ tomatoes, onion, peppers etc. That sulphate drugs are not good for Lupus patients, Statins are difficult. I be learned a lot by reading about contraindications & good foods. I’ve been fortunate to know some health care doctors & do not eat fatty meats anymore as they are hard on the kidneys. When some medical people look at my list of allergies to foods & meds they hesitate, like really? So glad I’ve found this site. My raynauds is the worst pain at times. My hands always hurt & are swollen. & blue when cooler temperatures. Any advice on this would be greatly appreciated. Lost much hair. Just accepting that. What do others do, if anything. ?
Welcome to the LUPUS UK Community Forum. I hope that you find this a helpful place for information and support. I am sorry that it has taken me a while to respond to your message; I haven't had much access to the site lately because of other responsibilities.
It really depends which doctors you speak to. Most GPs will not have a very good understanding of lupus because they do not see it very often. Rheumatologists tend to know a lot more, especially if they have a specialist interest in the disease. I would say that everyone with lupus is different and therefore not all people will experience flares as a result of eating certain foods (such as those from the nightshade family). I don't think it is accurate that all people with lupus need to avoid 'sulphate drugs', but certainly sulfa-containing antibiotics need to be avoided. Also, whilst statins may be 'difficult' for some, they can also play a very important role in reducing risk of cardiovascular health problems which are often of concern in lupus patients.
We have an article on our website about coping with Raynaud's phenomenon which contains a lot of information and advice you may find helpful - lupusuk.org.uk/coping-with-...
Hey Paul! I love this site, it’s going to be very useful for me in upcoming months. I have lived and being diagnosed in Poland - till now I went trough azathioprine (2,5 year), cyclophosphamide (1 year) therapies. Currently, I am taking hydroxychloroquine and mycophenolate mofetil and... I am just in the middle of my relocation to London, caused by promotion within my company. It’s really making me nervous - how to find a good rheumatologist in new country? Will he/she translate my current documentation? I am going to ask for drug prescription 3+ months here, however I am being really stressed how to get organized in UK. Any advices?
Good luck with your relocation! Will it be permanent or temporary?
If you will be accessing the NHS then you have a right to choose which consultant you get referred to. I can provide you with information about lupus specialists near to you if you are able to confirm where you will be living?
This page on the NHS site may be helpful for you - nhs.uk/using-the-nhs/nhs-se.... I don't know how they go about translation of medical records but I'm sure it comes up a lot and there is a service. You may be able to find details on the NHS website somewhere.
Thank you very much for this! Relocation going to be permanent, and I am going to be supported from both public and private medical healthcare providers. I will rent a property in Brentford.
As you'll be London based, there are a few excellent lupus clinics you may wish to consider. Guys Hospital and UCLH are both LUPUS UK Centres of Excellence which are available on the NHS. If you are seeking a Private clinic then the London Lupus Centre at London Bridge Hospital has a range of brilliant clinicians.
Hi there,
I'm 35 and was diagnosed three years ago with lupus and sjogren syndrome. I'm on Hydroxychloroquine 200mg twice a day. I've just returned to the UK for the first time since I was diagnosed. I was wondering about a few things and if there's anyone who might be able to help or give advice...
The first is that my GP prescribed me one month's worth of hydroxychloroquine... however this is going to end up being a bit pricey doing this for the rest of my life, is there any way they can prescribe more pills so I don't end up paying for a prescription every month?
I've also been referred to a rheumatology unit in the local hospital (as my GP didn't know anything about lupus) but the local hospital has doctors that are specialised in arthritis but not lupus specifically - is this going to be a problem? Should I ask my GP to refer me to a specialist centre or does that only happen via the local hospital rheumatologist? Or is it fine that they are specialised in arthritis and not lupus?
In terms of the optician - I used to go twice a year to an optical surgeon when I lived abroad but my GP has told me that the NHS doesn't do anything in relation to eyesight and I should just find an optician and do it myself? Is this accurate?
All advice and help welcome and hello to the UK lupus community - it's lovely to meet everyone!
PS if there's a group near Watford, Hertfordshire or in London I'd love to know about it!
Welcome to the LUPUS UK Community Forum. I hope that you find this a helpful place for information and support.
Have you asked whether your GP may be able to prescribe the hydroxychloroquine for a longer duration? Perhaps two or three months at a time? It is possible for a GP to do this, but they may be getting pressured by their local trust to only prescribe a single month at a time.
If you are prescribed more than one item per month then you may find a Prescription Prepayment Certificate would be more cost effective for you. You can learn more about this and other help with health costs at lupusuk.org.uk/prescription...
In many cases a rheumatologist at a local hospital will have sufficient knowledge and experience to monitor and treat people with lupus. However, if you would feel more comfortable being under the care of a specialist centre then you could ask your GP to refer you somewhere else. Guys Hospital and UCLH are LUPUS UK Centres of Excellence in London whilst Addenbrooke's Hospital is a Centre of Excellence based in Cambridge.
The guidelines for treatment of lupus with hydroxychloroquine recommend that the prescribing doctor refers their patient to an ophthalmologist for retinal screening annually after five years of consecutive treatment with the medication. If your GP is refusing to arrange this then I would recommend you discuss it with your rheumatologist when you see one.
The nearest group to you is probably in North London. They tend to meet in the Edmonton area. You can learn more and contact them at enfieldlupussupportgroup.org/
All rheumatologists are trained to take care of patients with systemic autoimmune diseases, including lupus. Arthritis is just a general term. As in all areas of medicine, there are academic physicians researching and focusing on a given area. If you would feel more comfortable being cared for at a lupus center, why not ask for a referral? At least one lupus center in London was discharging stable lupus patients to their local rheumatologists. Others can tell you more about what is happening there. Our system is different in the US. So I think you can feel comfortable that your doctor is trained in all areas of rheumatology. Talk to your GP to discuss what is best for you.
Hello Paul. Name is Jaime. I currently live in Pennsylvania in the US. Been making waves these last few weeks. Love this forum. What a wonderful resource. I’m a real physician scientist who developed SLE right in the middle of my heme/onc training...then I got fired...from a learning position. I have a most supportive husband and without him, I’d be so lost.
Things I’ve been diagnosed with over the past year...SLE, hyperthyroid, esophageal dysmotility, lupus anticoagulant, atrial arrhythmia and tachycardia, peripheral neuropathy, scleritis, lymphadenopathy, livedo reticularis, raynauds, hypertension, hepatitis (now resolved), SI joint dysfunction, slipped disc, b12 and vitamin d deficiency. Been through 2 PET scans, lymph nodes so big. Never had a clot, stroke or miscarriage (never tried) so I haven’t earned APS status. Splinter hemorrhages now finally gone. On aspirin and Plaquenil. I restart Imuran today for swallowing issues. Joint pains/rashes come and go but I refuse to let them get the best of me. Been this way for at least a decade.
Even as a heme/onc trainee, lupus and APS has always been a topic close to my heart. Question to you....any relation to Dr. Paul Howard of Arizona?
Welcome to the LUPUS UK Community Forum. We have many members here who are based in the US so hopefully you will feel at home. I'm glad that you've been finding the site helpful so far.
I'm very sorry to hear how your diagnosis affected your career. It is good to hear that you have a supportive husband though!
Good luck with starting on the Imuran again. I hope that it helps to get your symptoms under control.
I don't believe that I have any family based in the USA. Howard is a very common surname here in the UK so there are lots of us around.
I was diagnosed with S.L.E - APS - Raynauds at 18 I’m now 29! I wish I’d known about this page years ago. I wouldn’t have felt so alone. When I was first diagnosed I was suffering with blood clots in my legs as well as joint pains miscarriages. Swollen lymph nodes. Butterfly rash and enlarged kidneys. Over the years I’ve been on and trialed god knows how many meds and treatments. In 2010 I had to have my gall bladder removed as that had enlarged and the gall stones were causing excruciating pain. Keyhole surgery didn’t go to plan and then ended up having to cut down through my belly button then stapling me back together. Waking up after that was a massive shock and gut wrenching! Fast forward a while I met my now partner in February 2015 and my breathing became difficult and scans showed I had multiple clots in my lungs despite being on warfarin. Eventually I was swapped to a clexane injection daily. Again I was still developing pulmonary embolisms. I was sent for lung and heart function tests at the royal hallamshire hospital in Sheffield in 2016 where they decided I was a perfect candidate for a pulmonary endarterectomy at papworth hospital in Cambridge. I traveled there with my partner for an appointment with the specialists where they offered me the surgery, I was so scared. I’d only ever had my tonsils removed and my gall bladder which was supposed to be keyhole. Knowing they wanted to perform open heart surgery to remove as many clots as they could was terrifying to me esp as there were quite some serious risks. They saw that and offered me a couple of weeks to think about it to which my partner piped up and said she will do no such thing you put her on that list today! I was in no fit state to argue, I was still in shock to find out that it was serious enough to warrant me having this scary procedure. Eventually that evening I was on my way home still in a total state of shock. I now at 25 had to go home to the midlands and tell my family I was on the waiting list and the risks involved. 2 months later I got the call from papworth with a date for surgery 3rd November 2016 a week away! The week flew by! 2nd of November my partner and I packed the car said goodbye to my friends and family and set off for Cambridge! My partner was staying in the hospital accommodation for the week. That evening I had yet more scans and was shown to my bed my partner was given a time that night to come and see me the next morning. 5am the nurse gently woke me to shower and prep me for surgery. My partner came and just held me, I cried he cried the whole team cried. He walked with me to theatre and we said our “see you’s“ I met my surgeon and broke down into sobs pleading with him not to let me die yet. He held my hand and tried to reassure me. He even said he would be at my side when they planned on waking me up 24 hours later, they got me ready and calm, everything went black...............
When I woke there was a nurse stroking my hair saying come on Karrina keep breathing baby. Everything went black again...............
Again there was a nurse stroking my hair when they tried again another 24 hours later. My lungs were so weak I was so exhausted I had to keep on being reminded to breathe as I would just stop. When they were happy I had to cough up the tube out of my throat and as promised the surgeon was standing at my window in critical care. I was so grateful in that moment to be here alive! My partner arrived shortly after all breathless at running from his room to my room in the critical care department when they called to tell him they were trying again to wake me up. He cried and I just smiled at him grateful to have another chance. Later when I was a bit more with it the nurse told me that he had actually come to see me when they phoned him to say I was out of theatre he came into my room when I was on the ventilator looked at me and just said “Nurse! I’m gonna pass out.” The nurse shouted from my door “Help! We’ve got a fainter!” Another nurse had to get him a coke 😂 oh how it hurt to laugh and how embarrassed he was. When they were happy my lungs were strong enough I was transferred from critical care to the ward I’d be on until I was ready to leave. 2 days later I developed headaches and again I got scared. Because one of the risks were that I could develop a bleed on the brain. I was having a scan within hours. I got back to the ward and it was drug round. The nurse gave me warfarin without waiting for the results from my scan. I got the results half an hour later when the doctor saw the images. I had developed a bleed in my brain and he said to hold off on my warfarin for a few days and to see what happens, I of course told him the nurse had already given me warfarin. He was outraged! Needless to say I was scanned again the next day, this one showed it had got bigger. The doctor came again to tell me and he couldn’t apologise enough I said it wasn’t his fault obviously. He insisted that the nurse would be made to apologise too. I felt there was no need though as the damage was done yet she was made to come and apologise. I never saw her again throughout my stay. A day later again I was scanned and this time it showed signs of reducing to the doctors relief, he was becoming worried that they may have to drill a hole in my skull. (No thank you! No more surgery!) a couple of days later I started walking around and was able to go to the bathroom by myself. Nurses were chasing me along the corridor with my oxygen canister as I’d left my bed without it. Lol. After a week my partner had to go back to Staffordshire, Lichfield. As he had to go back to work. Friends and family would make the trip to see me when they could but it wasn’t the same as having my best friend and partner by my side. I wanted to discharge myself. I was seeing patients that had their surgery after me leave before me. Granted some of them didn’t have as many problems as I might have had, but it was still so disheartening. I wanted my body to just get stronger. And everyday insisted I wanted to be discharged. In one last attempt at keeping me in the hospital my partner said he would travel each day to see me. I felt terrible and selfish letting him do it. He would bring my brother with him for company. Eventually doctors agreed reluctantly to discharge me almost 3 weeks after my surgery I spent the next couple of days practicing stairs for when I got home and coming off the oxygen. Finally the day came and I was sad to be leaving the hospital. I cried when I met with my 24hour critical care nurses to say goodbye. I cried when saying thank you to my surgeon and I cried when saying goodbye to my ward nurses. It was a rollercoaster journey but I was going home I was exhausted just getting to the car but I was excited to be going home! I still have yearly check ups now at the royal hallamshire. I still get very breathless because not all the clots could be removed. But I’m here! I dread to think where I’d be at if I’d decided not to go ahead. I still have many problems I have constant headaches, I go temporarily blind in my left eye at times. It comes like a fog down over my left eye lasts a while then as quickly as it came on it just goes. My memory is terrible now. I can’t concentrate very well. And get irritated at the littlest of things.
I had a stroke in November last year at 28 and on the 3rd of November had a massive seizure. I’ve had numerous seizures since and my rheumatologist thinks the stroke triggered them but with having lupus I’m continuing to have them. Life is hard. My mobility is poor, I fall over without warning and continue to have right sided weakness since the stroke. My balance is terrible and I won’t go out unless accompanied in case I fall or have a seizure. Until November last year I always worked full time. I find I mentally struggle with things now and I rage at the slightest of things. I feel angry and bitter at the world. I feel like a burden to family and friends and often feel as though life would be easier for them without me. I’ve recently found out I have a leaky left heart valve too which is now something else having to be monitored. I just feel so let down by life in general!
Welcome to the LUPUS UK Community Forum. I hope that you will find this a helpful place to share as well as access information and support. Thank you so much for sharing your story and experiences with us.
Hi just diagnosed spent 9 days in hospital - all new to Lupus- two plueral taps and still got issues pain in pluera. This site is great and informative. Looking to speak to anyone who has similar experience symptoms and how you manage. Thanks.
Welcome to the LUPUS UK Community Forum! We're glad that you've found us and hope that you find the site a helpful resource for information and support. I'm glad to hear that you've been finding it helpful so far.
Hi there I'm Rebekah, 29 and I am not even sure I have been diagnosed with Lupus yet.
I have been under investigation at my fertility centre recently as I have had 3 miscarriages over the last 12 years. I was diagnosed with PCOS when I was 20 and have always put the miscarriages down to that.
I got in to a serious relationship last year and have started to think about having children. I was referred to my fertility centre where I had bloods taken to check for some things like genetic abnormalities, autoimmune diseases etc.
I got a phone call from the district nurse just 2 days ago telling me that I have tested positive for Lupus. She then went on to say that it could be a false positive and they want to retest me on the 8th of October. I am only too aware of Lupus as one of my family members has it. I am terrified at what this holds for my future
Welcome to the LUPUS UK Community Forum and thank you for introducing yourself. I hope that you'll find this a helpful place for information and support.
Have you experienced any symptoms other than the recurrent miscarriages that are currently unexplained and could be attributed to lupus?
Very often, when someone has blood tests following recurrent miscarriages the test is actually for something called 'lupus anticoagulant', rather than the disease systemic lupus erythematosus (SLE or lupus). Lupus anticoagulant is actually a blood test for a separate condition called antiphospholipid syndrome (APS or 'sticky blood'). You can learn more about this at aps-support.org.uk/about-ap...
'Lupus anticoagulant' got its rather confusing name because it was first identified in people with lupus. It isn't generally a test used in the diagnosis or classification of lupus though.
Please let us know how you get on with the re-tests. If you need anything, please let me know and I'll do my best to help.
Hi Paul, my name is Roberta, I was diagnosed with SLE 5years ago. after the diagnosis I've lots of pain and have lost lots of friend because I'm always complaining of fatigue. please can you tell me how I can find some support net work that will help me not to feel lonely any more. thanks for this web site.
Swimming234_ I’m so sorry to hear about your loneliness. I totally understand, as I’m sure most everyone else here does as well. I’ve somewhat sequestered myself because A) I don’t feel like others will understand the extent of things at times B) I worry about talking about myself too much because this is always on my mind C) I’ve put on weight, lost hair (though I’ve gotten a lot back. No bald patches, but a ‘wide part’- thinning hair), my skin looks bad, I’ve lost teeth, blah, blah, blah... bottom line is I’m embarrassed.
Luckily I have a husband who is by my side. My best friend.
Swim, we are all here for you, so please, talk to us, we ‘get it’. All my best to you and I hope you find relief.
thanks for the reply, it hasn't been easy. I try to stay strong for my kids. yesterday I woke up feeling very stiff. I found diclofenac gel very helpful for my joint. I'm please you have support from your husband.
Think of it as a rough ride rollercoaster. Full of ups and downs and unexpected twists and turns. Hold on and try to enjoy the ride. I’m sure we are learning much through this adventure. Much about compassion. Much about enduring. Much about strength and community. All types of lessons. And like most things, this will be easier to get through with others, instead of by ourselves. Stay strong and know you have family here who love you.
Welcome to the LUPUS UK Community Forum. I'm glad that you've found us and I hope this will be a helpful place for information, support and friendship. I'm very sorry to here that you have lost a lot of friends following your diagnosis. I'd recommend that you write a post in the forum to introduce yourself to everyone. There are loads of people here who will have had similar experiences to you and happy to connect and chat.
If you are based in the UK then I can also provide you with information about your nearest regional support group and trained volunteer telephone contacts if you would like?
If you need any more information about lupus and LUPUS UK, we have a free pack which you can request or download at lupusuk.org.uk/request-info...
Hi I’m 47 and recently diagnosed. I’m just so overwhelmed as it’s been a roller coaster few years. Ive had asthma and Colitis for over 20 years but in the last 4 have had inflammatory arthritis,rosacea and now lupus to add to the list. Hydroxy doesn’t agree with me so I’m on interim steroids. I didn’t feel ill beforehand and it was just a blood test that showed positive ana etc to give me that diagnosis. Ive coped with all my other illnesses but I wish I could get a handle on the lupus. Ive had a fresh batch of tests and am awaiting the results. Very much expecting them to say I have something else too!
DaftCat, I’m so sorry to hear about all you are going through. Many people on here, like you, are going through multiple problems all at once. I admire your strength so much. You all are warriors! We are here for you so please know this is a place of listening, and understanding.
Welcome to the LUPUS UK Community Forum. I hope that you'll find this a helpful place for information, support and friendship. I'm sorry to hear that you are overwhelmed following your diagnosis, but I hope that with the help of your medical team you will feel more in control soon.
It's unfortunate that the hydroxychloroquine didn't agree with you. What sort of side effects did you have?
Sorry to hear that. Sometimes the the version of hydroxychloroquine produced by certain manufacturers can make a difference. Quite a few people with lupus find that the Quinoric or Bristol versions cause them gastrointestinal disorder (of which nausea/sickness can be a symptom), but they are fine on the Zentiva version. You can read more about this at lupusuk.org.uk/hydroxychlor...
I hope that you are able to develop a good relationship with your new consultant.
Hi, Thankyou for the welcome. I am here in support of my sister,who has discoid lupus,and is having many flare ups. She was diagnosed many years ago,and in recent years her flare ups are very frequent, despite being on hydroxychloroquine. And steroid ointment. She is suffering badly with facial lesions which are so painful. Myself,I am a fibromyalgia warrior,and have my own demons to slay,😊 But we support each other.
Welcome to the LUPUS UK Community Forum. I hope that you'll find this a helpful place for information and support. I'm sorry to hear that your sister has been struggling with flares despite her treatment. Is her consultant planning any changes to her treatment regimen? Is there any clear trigger for these flares?
Hi I have recently been diagnosed with lupsas and arthritis wanted to talk to someone who understands what i go through give me advice and be supportive
Hi Cherry14 . Welcome to the LUPUS UK Community Forum. I hope that you will find this a helpful place for information and support. You are always welcome to post any questions you have in this forum as the other members are very helpful and will share their experiences and guidance with you.
If you'd like to meet with other people who have lupus, we have groups around the UK. You can find your closest group at lupusuk.org.uk/regional-gro...
If you'd like to chat to someone else with lupus one-on-one we do have a network of trained volunteer telephone contacts. If this is something you'd be interested in then I can provide you with more information.
Hi all I have recently been diagnosed with Lupus, after fibromyalgia and then UCTD. It's been a long journey, like 5 years but I finally feel like I'm getting somewhere and have some sort of explanation for all the symptoms over the years. Of course that doesn't make living with it all any easier but I'm starting on hydroxychloroquine treatment tomorrow so fingers crossed.
Hi Sbey15 . Welcome to the LUPUS UK Community Forum. I'm sure many members of this community will share your experience of almost being pleased to receive a diagnosis because at least it provides some answers. I hope that you are getting on ok with the hydroxychloroquine? Please keep us updated with how you are getting on.
If you need anything, please let me know and I'll do my best to be of assistance.
Sbey15, we will all cross our fingers for you as well.🤞 and welcome to the group.🙏 all my best!
Hi, I was diagnosed with undifferentiated connective tissue disease earlier this week. I have family members with SLE and RA but I hadn't heard of UCTD until my diagnosis. I've been started on hydroxychloroquine. I'm hoping to fing out more about my condition from other people's experiences from this group
Welcome PJqueen. There are many of us with UCTD on the forum. It can be a confusing diagnosis, but maybe we can help you understand it. Feel free to ask any questions.
Welcome to the LUPUS UK Community Forum. I hope that you'll find this a helpful place for information and support. UCTD is actually one of the more common diagnoses of patients in rheumatology clinics - unfortunately due to its diverse nature it isn't well-recognised outside of those circles. I hope that you get on well with the hydroxychloroquine. Please keep us updated.
As KayHimm said, we have quite a few people with UCTD or a similar diagnosis in this community.
Welcome to the LUPUS UK Community Forum. I hope that you will find this a helpful place for information and support. If you need anything, please let me know.
If you'd like any information about lupus and LUPUS UK, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...
Hi, I'm Liz and I was diagnosed with SLE in the mid 1980s, so just a little while ago. I'm fortunate I've not (yet!) had anything major but the constant raft of lesser evils doesn't half get you down! 'Just one of those things' that people including my GP say isn't quite hitting it when you get one, then another, then another...
I've got a couple of questions but thought I'd say hello first. I hope everyone here is keeping as well as possible and safe.
Hi I'm Ann from Innerleithen in the Scottish Borders. So grateful to have discovered Lupus UK. Have had SLE for 20 or more years. Very grateful to hospital staff who diagnosed this in October 2019 during a pre op assessment. Stay safe all.
Very recently diagnosed with lupus but that was all I was told. Still digesting this so trying not to read too much and stress out even further at the moment. I have no idea what 'type' I have, didn't even know there were different types.
On steroids at the moment but am due to start a weekly chemo pill and daily antimalarial pills soon. Not convinced starting chemo in the current climate is the best idea, especially given all the horror stories the doc told me and the fact that I'm quarantining from the rest of my family in a bedroom on my own for the foreseeable.
Finding a lot of what I'm reading here and on lupus.org.uk very overwhelming and extremely scary, even simple advice like washing your shopping, which is why I've made the decision not to read much. It's just making things worse.
Living in the Scottish Borders and only just having a diagnosis means I haven't had the shielding/advice letter and can't join the government's online help/register thing which is only for the English.
So, totally on my own with all this and not wanting to look at yet more scare stories and no medical contact unless it's an emergency or they contact me.
Trying not to feel sorry for myself but some days it's very hard. If I'd written this another day the tone might be different. Sorry.
Hi Whippet_lady . Welcome to the LUPUS UK Community Forum. I hope that you'll find this a helpful place for information and support.
I think that it is sensible not to read too much at the moment. There is a lot of information out there and you'll probably find only some of it applies to you. Lupus is such a diverse condition that we have to cover all eventualities - it makes reading about the symptoms very scary, but most people won't experience a lot of them.
We'll hopefully be getting more advice and guidance about support in Scotland soon - keep an eye on my posts as I'll be updating our information regularly.
If you need more information about lupus and LUPUS UK, you can request or download a free information pack at lupusuk.org.uk/request-info...
Hi BeeHoneyB . Welcome to the LUPUS UK Community Forum. I hope that you'll find this a helpful place for information and support. If you need anything, please let me know and I'll do my best to help.
Hi, I was diagnosed with SLE and RA five years ago at 18. I still find it quite hard to openly talk about the effects of SLE on me, particularly since I have been managing fairly well on medication over the last three years and friends, family, employees do not see the really low points. Very happy to join this forum to hear from others, learn from others and ask questions about living with Lupus.
Hi Marley06500 . Welcome to the LUPUS UK Community Forum. I hope that you find this a helpful place for support and information.
It is great to hear that you've been managing fairly well on medication.
I think there will be many other people here who can understand how the people around you don't see everything. I hope you feel comfortable sharing here.
I strongly suspect I have some form of lupus, having developed a butterfly rash after being out in the sun earlier this year - and type 1 diabetes for 32 years .... with endless complications and problematic control for many years. Currently having tests and waiting for appointments - so just starting out on the long journey to a diagnosis or not!!
Welcome to the LUPUS UK Community Forum. I hope that you'll find this a helpful place for information and support. How are you getting on since you posted? Have you had any test results?
Hi all, just joined. I’ve had a number of symptoms of lupus over the years, but not the butterfly rash or joint swelling or pain. I recently had the ana test which came back positive (For both ana and dsDNA I believe) and have been referred to a rheumatologist. There aren’t any appointments currently and with waiting lists I may not be seen for months.
While I wait to be diagnosed I wondered if anyone can help by sharing your experience of the stage I’m at, waiting for referral, wait times and what to expect?
Any tips on managing fatigue? I’ve had headaches and migraines which have been worse in recent months, does anyone else experience these?
My other main symptoms are mouth sores (geographical tongue- particularly worse with anything too citric), some travelling pain, muscle pain at times, balance problems, thinking and memory problems, colitis, fever on and off and hair loss.
Any one have anything similar and how did you get diagnosed? Also, I realise that as I haven’t yet been diagnosed it could be something else, but as the referral seems so far off I want to see what I can do in the meantime.
Thanks so much Paul, hard to know where to start, so this feels really helpful. Will have a look at the links and create a post. I put it in the ask a question section, would that work?
Hi Paul, thank you for that warm welcome, having read a few comments from participants I feel that I am acquiring some more knowledge about Lupus. It's a brilliant site so thank you.
Hi, I was diagnosed with APS almost 10 weeks ago, three days ago diagnosed with lupus. SLE.
I'm waiting to talk with the nurse counseller, get a baseline eye exam after having a retinal bleed in February then to start on hydroxychloroquine.
Reading as much as I can atm to see what I can do to improve symptoms around other conditions I have, asthma, gluten and lactose intolerance, osteoporosis, overweight. I've been trying low carb to lose weight, has been good but now I'm not sure what's best?
I am very happy to be part of this group; although I do not know very well if I should.
I live in Cambridge and I have been having different symptoms for a long time such as migraines, headaches, Raynaud's, irritable bowel, a lot of fatigue, muscle aches, hand finger's joint pain, redness on the face and bridge of the nose that doctors said to be rosacea, ulcers in the mouth, fall of hair, dry eyes and mouth, low vitamin D, anemia, twice lymphopenia and thrombocytophenia and low levels of complement C4 always. I have been diagnosed with Undifferentiated Connective Tissue Desease for two years and taking hydroxychloroquine but they have not been diagnosed with lupus because they do not find antibodies. C4 levels do not increase either. I am also taking vitamin D, vitamin B and iron and even so, the values remain in the lower end of the range.
Looking for some clarity, I did a genetic and generic test with TellmeGen and it indicated that I have a high predisposition for developing different autoimmune diseases, especially lupus. I have told the Vasculitis team but they do not seem to take it into account.
I also asked them for a support group because I needed to find people who were living what I am and they told me this group, lupus UK but told me that I don't need it yet. I did not understand what they really meant, not yet ... is it necessary to have antibodies or organic damage to be part of the group? Sorry if I shouldn't be here.
I have read many of your comments and I feel totally identified with you.
Thank you very much for having me. I much appreciate it.
Hello everyone,So happy I found this site! I live in Michigan in the US. I have a lovely husband & two great cats & am excited to work in the garden as soon as we warm up. Although I'm nervous about how much I will be able to do once I get out there due to the discomfort. Maybe by then the hydrochloroquinne (400 mg) will have kicked in!
In hindsight I bet I've had Lupus since I was in my mid 40's. I'm 64 now. You know how we tend to "push through" do "one more thing"? I tended to Ignore the discomfort & pain assuming it would go away. I had a not-so-strong diagnosis of SLE in 2017 so I chose to deny it. Life got very stressful - Loss of three loved-ones, loss of job & two moves. Then in the Fall of 2019 I had heart palpitations seemingly non-stop & felt light-headed. I went to see my husband's cardiologist & discovered high BP & cholesterol which he has successfully treated with meds & I am working on dropping some weight. Once that was under control, he strongly suggested I follow up by finding a rheumatologist & checking up on the Lupus diagnosis. It took a while for first appt this past December but the bloodwork confirmed it along with sjogren's syndrome. Follow up bloodwork also showed MGUS so I followed up with an oncologist who assured me not to worry as my values were low & we would monitor it with 6 month bloodwork. So, now I am in acceptance mode & using "shelter in place" time to figure out how to best care for myself. I'd like to find a good book about Lupus - any suggestions?
Welcome to the LUPUS UK Community Forum. I hope that you find it a helpful place for information and support.
My go-to book for anything lupus is "The Lupus Encyclopedia" by Donald E Thomas Jr. It is written in quite accessible language. It's not a book to read cover to cover, but is an excellent reference if you ever have a question.
Thank you for the warm welcome. I’m a lupus UK member. Attend local meetings outside of Covid. This is a great site particularly for those new to Lupus.Glad I joined!!
I have been struggling to get an official diagnosis for some time now. I have joint aches which effects my tendons, loss of grip and strength in hands, reynaunds and my hands are swollen: rose in colour with dryness and cracking to ends of fingers. Anyway I had enough ‘things’ wrong me so off I trot to the gp.
The first visit was a waste of time. I was given some steroid cream, some emoluments and sent away.
My second visit was a bit more successful but even though I was telling the gp about the problems under the skin they were just trying to treat what they could see. Anyway I got a referral the dermatologist.
The dermatology team then tried to triage me through an app!!!
The dermatologist, when I got to see him took one look at me and said - nothing to do with me. You need to see a rheumatologist. Yes I thought so too!
Then the hospital/doctors lose my referral!
So I end up paying to see the rheumatologist privately. Because of my age, gender, blood tests etc. He doesn’t feel it’s lupus. He’s called in inflammatory arthritis.
So I hope you don’t mind me joining your group. I am trying to cast the net as wide as possible to gather as much info as possible.
Another reason why I feel I have an auto immune condition is as I have just had my COVID jab and it’s knocked me for six. Has anyone else had this? I walked up a hill the other day and it took all my effort to do this, coupled with the fact I have had a persistent and constant for for over three weeks now (it’s lessening but is still there).
Has anyone heard of Epstein Barr virus and has anyone been tested for this?
I have had discoid lupus in the past and an episode of Bell’s palsy (again some years ago) and I wonder if this is at all related?
I had very similar symptoms after my vaccine. It was brutal. I had an EBV virus detected as a “recent infection” in 2015. I believe my health decline began there. I’d love to hear your thoughts. Best!
Hello my name is Caroline, have Hashimoto's for over 10 years. Hairdresser noticed slight bald patch 18 months ago, endo thought could be alopecia another auto-immune disease. Managed to see a dermatologist who did a scalp test - which confirmed lupus erythema - but 6 page detailed blood tests didn't confirm this. Prescribed me 400mg of Plaquenil per day for 3 months. Very reluctant to start this and want a second opinion as all my health problems have been triggered by French specialists overprescribing/overmedicating. Of the 6 page blood tests only 2 items were not 'normal': Electrophorosis proteins: Albumine seriq was 48.9 g/l (whereas the norm in France is 40,2 to 47,6) and Alpha 2 globlulines 4,5 g/l (norm 5.1-8.5). The conclusion was ‘Qualitative profile of electrophoresis without notable anomaly. Absence of visible clonal patholog.' Having read online most other countries seem to prescribe cortisone cream first - which would be my preferred option seeing as I tend to have reactions to a lot of drugs. Wondering whether I should send my results to my rhumatologist? Any advice gratefully accepted!
Hello i need help getting out of my nightmare. I'm stuck in hospital with 5 years of misery. Nerve problems in my feet, liver problems, losing teeth fast, hearing voices, eye bleeding and clips, stroke symptoms, confusion memory loss and blackouts, had headon car crash and knew nothing about it 2 years ago, on stroke ward now and doctors not listening to me. I cant see in my right eye, can't make out faces, gall bladder I flamatuon and stones, falling over in a mess and me and my partner alone in the prison, only found out about lupus after eye specialist found my bleeds and clots after being admitted to stroke ward at Barnsley. Please someone help me
Thank you so much for this incredible website. I’m so happy to be connect with you all now! I had a question.
Is this a butterfly rash?
I have all the symptoms and blood work that Is really leaning towards lupus. Positive ANA, abnormally low neutrophils. Vitamin d deficit, low TSH, and Sjögren’s. My aunt had lupus, my grandmother passed away from rheumatoid arthritis and my mother has psoriatic arthritis.
Last night I had an episode of raynauds and it really scared me. My dr isn’t very attentive, because she dismisses a lot of my concerns, because I also have anxiety. All thoughts and comments are appreciated. I don’t really know where else to turn. Thank you!!!
New to the forum and so glad I've found it! Was diagnosed recently with SLE and Fibromyalgia (Dec 2020). Trying to find out as much as I can and any tips or advice anyone has on managing SLE long term. Hopefully make some new friends who understand what it's like to live with chronic illness along the way x
I have been diagnosed with SLE since 2019 after a bad bout of pneumonia. I have been living with the general symptoms (fatigue, borderline anaemia, headaches) on and off for over 10 years before that.
Here to chat, give and receive advice and connect with others as we fight the good fight!
Hi, I started having symptoms in March of this year. Despite many blood tests & conversations with my GP a diagnosis is still awaited. A month ago I was referred to a Rheumatologist who has so far diagnosed me with oestoarthritis in my spine although she believes this is secondary to what's actually going on. Lupus and Sjogrens syndrome are two conditions being investigated as the cause amongst other things. The fatigue and pain is debilitating. My frustration level is extremely high. I have joined the forum in the hope that sharing my story may help
Hi Thank you for this Great Site! very beneficial for tbose suffering with SLE like me . Been diagnosed officially since 2009., but presented symptoms since 2006.Lost majority of vaccine immunity in 1999(when daughter was born) .According to my hubby I nearly lost consciousness not long after birth but I came around- from shock- Loss of blood. was also on crutches 6 monts before birth of baby and 6 months after birth, as I had pelvic problems.(SPD) also could not retain major vaccine ie Rubella, Only vaccine found in system was BCG with very low count and Hep B low count. this was all in 1999.I gave no thought to as to why I did not hold any immunity. thought it was just me . as there were others also have no immunity to vaccine. Then diagnosed with severe migraines 2006 then SLE and bronchiectasis in 2009..
Thank you for this site. I’ve been recently diagnose last week when I joined this group. I’m 47 years old , I live in Edinburgh and I’m originally from Bolivia. I had various symptoms since I was a teenager such as strange allergy to mosquito bites, fainting, vertigo. During the last 3 years other symptoms like sweating during sleep, pain in my hands, fatigue, anemia, swollen and stiff hands, back pain, arthralgia in feet and hands, erythromelalgia in hands. The first rheumatologist didn’t diagnose it despite of my ANA positive because I didn’t have a rash in my face but this year I requested to see another rheumatologist and finally got it diagnosed as my blood tests showed leukopenia and lymphocitopenia. I’m starting medication from today. Is there any support group in Edinburgh?
I was diagnosed with lupus 12 years ago, at a time of extreme stress. I have not experienced a flare again until what I take to be one now. It’s taken me too long to join this community, as I’ve been in denial about my condition. Since surgery last March I have been experiencing a severe all over body rash. I am now on my 5th steroid prescription.
I’m excited to ‘chat’ with others about lupus, and thanks for letting me join your community.
Hello, I am Yvonne, in my 60s. I was hoping to chat with someone/get some advice on Discoid Lupus. I used to live in Herts but moved to Scotland in 2019. I had been taking hydroxychloroquine and mepacrine since my diagnosis of DLE in 2015. Just before Christmas I was told there was some damage to my eyes, I am awaiting more testing on exactly how bad this is but, in the meantime, have stopped the hydroxy. The eye issue in itself is pretty terrifying. I don't know if I would have taken it if I'd realised it could make me go blind.
Dermatology are suggesting I take something called Acitretin instead. They have told me to use Dermovate (Clobetasol propionate) for a month on the lesions on my face. I also have other creams. One of the lesions is very close to my eye. I read that getting the steroid in your eyes can cause glaucoma and cataracts. I am concerned about the effects of using the Dermovate for a long time. I was told I shouldn't worry...the scarring by not using it will be worse that the long term effects of using it.
What I really want to do is talk to someone privately about the drugs/creams because my NHS dermatologist is not very informative. I am unsure about how bad/common the side effects of the Acitretin are and whether to take it. Being in Scotland I don't think there's any point my asking to be referred to Lupus UK Centre of Excellent hospital, they are all in England and I don't think I can be referred.
It maybe that my dermatologist is giving me best advice but I would feel happier if I could talk to someone, just once, to confirm what treatment they would advise and see if it matches up. The side effects listed for Acitretin sound like things I don't want haha. I realise a lot of the information on side effects of drugs can be overstated but, having no statistics, I can't be sure how bad it's going to be.
I did speak to a private rheumotologist at the London Bridge Lupus centre in London. Cost a lost! One of the things he said is that Acitretin was not really something he would prescribe, he'd go a different route. However he also said "that's a dermatology thing".
So...does anyone know a private dermatologist they've seen for DLE that they would recommend? I really need some urgent advice on whether to take this drug and continue with the strong steroid cream.
Hi, I'm Lindsay, from Norfolk. I don't even know if I've got Lupus, but SOMEthing isn't right and I'm searching for answers. I'm 68 now but when I was 37 my hair began falling out, at the front. I don't know it it's relevant, but I had an itchy, red rash around my forehead and up to my hairline. This disappeared after a few weeks. My GP dismissed me saying it was just something my hairdresser must have used. This was rubbish, because I hadn't even been to the hairdresser.
At 42, I was diagnosed with autoimmune hypothyroidism. At 43, my early menopause was about finished. I was told once my thyroid meds were optimal, my hair would grow back. It continued to fall out.
Since my 30's I have had periodontal problems. Receding gums, bone loss leading to tooth loss. I have seen my hygienist every 3 months for the past few years.
Weird white circles on my nose began appearing a year ago. I went to a private dermatologist (as I'm told , the NHS isn't interested in "cosmetic" problems) and she said I had phymatous rosacea....so advanced it was now rhinophyma. This was a shock because I didn't even know the occasional flushed face I had in the past, was rosacea. I never had a rash, nor pustules. I wouldn't say this was a butterfly rash typical of lupus, but I'm no expert!
I have many aches and pains, sore joints and muscle aches. Awful pain around my sacroiliac joint. I was referred to a rheumy a few years ago when my fingers were aching really badly. I have had a sore in my left nostril off and on, for decades. It heals for a while if I use Sudocrem but usually comes back.
I get styes regularly and my eyes feel constantly itchy, teary yet dry, blurred vision a lot of the time. I use a foam for demodex mites on my eyes which eases the itching, followed by Optase spray for moisture.
I thought I might have Sjogren's Syndrome but a ANA test was negative. This was through a private testing company thyroid folk use a lot (not sure if I'm allowed to say their name on this forum). The company wouldn't tell me the actual result though....just said negative.
I do have symptoms of Sjogren's eg vaginal dryness from age 42. (Sorry, tmi, lol)
I do know that negative tests are not 100% accurate and one can still have a problem.
My hair loss has continued since the problem began 40 years ago. I am almost bald at the front now. I have recently learned this could be FFA?
My GP is USELESS. He once gave me a tube of cream for my eye problems and when it didn't help he just shrugged and said try an eye mask. I bought one, but it didn't help.
I joined the Sjogren's forum because SO MANY of my symptoms could relate, but someone on there said to another member, take a look at the lupus group as there was more info and they were less quiet.
So, here I am. Bald, itchy blurry dry eyes, aching joints and muscles with a nose which (I am told) will continue to grow lumps and bumps, a vag as dry as the Sahara desert, trouble swallowing (feeling of a lump in my throat all the time......awaiting result of a barium swallow) and brain fog.
Please don't think I'm a fraud for joining your group without a diagnosis......I just want to lurk and learn. Thankyou.
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