Welcome to the LUPUS UK Community. Feel free to introduce yourself.

Welcome to the LUPUS UK Community. Feel free to introduce yourself.

Welcome to the LUPUS UK HealthUnlocked community.

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.

Feel free to start commenting and asking questions now and we or other members of the community will do our best to respond as quickly as possible.

If you're new to the community why not introduce yourself? Say hello and share something interesting about yourself by commenting below.



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300 Replies

  • 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.



  • Hi Carole,

    There is a Suffolk Lupus Group. You can find out about their meetings and contact them through their website here - suffolklupusgroup.org/

  • Me just email Christine.Froggatt@sky.com.

  • 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 Frances. Welcome to the community. I hope you find it helpful. If you need any information, or help with the site, please just let me know. :)

  • 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.

    Thank you

  • 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;

    Melanie Rees - mel@thegreencentre.co.uk

    Harsha Patel - harshanishpatel@yahoo.co.uk

  • Hi

    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.

    Good luck!

  • 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 Carol. Welcome to the community. I hope that you find it helpful and you learn a lot. Let me know if you need anything.

  • Hi Paul. Can you tell me if there is a Chingford Lupus group.

  • 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.

    Good luck

  • 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.

    Cheers all,


  • 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.

  • Thanks Paul. Had a bit of a rough Christmas with a major flair so trying to stay positive.

    Lots of reading on the forum so it's a case of educating myself to this wide ranging illness.

    Could you let me know if there are any Lupus support groups in the Plymouth area of Devon?



  • 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....

  • Hi Paul, thanks for this, I will make contact.

    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.

  • Paul is there a support group in Sheffield or Yorkshire as I am interested in joining.



  • Hi Chrissy53,

    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, my name is ang! Was beat I by my ex but found the drink to meet my princes !!! Just can't have that baby cxxx

  • 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

  • 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 :)

    Let me know if you need anything.

  • Oyinda your positivity shines through your post!

    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.

    Keep blossoming 🌷

  • 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 :(

  • Hi goldengirl101,

    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.

  • Hi Paul, many thanks for replying to me. Could you please tell me where UCLH is as i've not heard of it before? Thank you.

  • Hi. UCLH is the University College London Hospital. It is just near Euston station in Central London.

  • Many thanks Paul.

  • Hi everyone,

    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.

    God bless you all.

  • 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 :)

  • Hey sleepee1

    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.

    Much love & appreciation for your post.

  • 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 Samh. Welcome to the community. It's great to see such a positive attitude. Let me know if you need anything :)

  • Hi just discovered I gt lupus last year january

  • Hi Dallo. Welcome to the community. How have you been getting on since diagnosis? I hope you find this site helpful. Let me know if you need anything.

  • 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.

  • Hello everyone,

    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.

    Best wishes


  • Hi Saradha,

    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.

  • Just found out i need a blood transfusion I'm scared

  • 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.

  • Just found this site a few days ago & love 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...

  • Hi I'm diane. I have been reading about the cyclomegavirus being responsible for lupus. Very interesting stuff!!

    Ps. i'm from usa.

  • 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 I have lupus for ten now. Some times to cope. I would like to know if they have any groups in westyorkshire (Bradford) please?

  • 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!

  • Hi fishlet,

    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.

  • Hi

    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.

    Thank you spending the time to read this

    Christine Froggatt

  • 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.

  • Hi Cindy,

    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 everyone. There is a new Lupus website for Northern Ireland patients


  • 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!

  • Hi have just been diagnosed with lupus two week ago have no idea what to do x

  • Hi clare333,

    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.

    Have you been started on any treatment?

  • Hi thanku yes one of your colleagues send me some information and I will be.joining lupus uk soon, I have been started on Methotrexate, naproxen

    Tramadol and hydroxychloroqyine, all very confusing and at min have also took shingles at min

  • 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. :)

  • Hi seoseo,

    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.

    In my thoughts & prayers too.

    God bless

    Lynn XX :)

  • Thank you Lynn dear! See below...


  • 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

    Grateful thanks,

    Lynn XX :)

  • Hi Lynn,

    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.

  • Hi Lynn!

    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!

    Paul? Could you suggest anything?

    God Bless!!!


  • Hi Annie,

    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.

    God bless you

    Love & ((Gentle Hugs))

    Lynn XX :)

  • Dear Lynn,

    All I see is the reply button. What do I do?

  • Hi L-2day4u,

    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'.

  • Hi Annie,

    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?

    God bless

    Lynn XX :)

  • 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!

    Grateful thanks to you

    Best wishes

    Lynn XX :)

  • mypainfibro supports all groups in the UK with an invisible illness we call our campaign Peek a Boo we see your invisible illness

  • 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. :)

  • Hi maggielee.

    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

  • Hi andreabm,

    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.

  • Hi johare,

    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 (http://lupusuk.org.uk/lupus-uk-shop/memberships) 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.

  • Hello I'm Marylyn from Pembrokeshire UK I have Lupus,nice to chat with any one with lupus SLE.

  • Welcome to the site Marylyn. I hope that you find it a useful source of support and information.

  • Hi, Marylyn, I'm new to the site also. Its been nice to read about people who understand.x jo

  • 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.

  • Hi Claire12,

    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?!!!

  • Hi minnime63,

    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.

  • Hi alf53,

    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?

  • He is supposed to be the specialist in Lupus! i live near Swansea in South Wales.

  • 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 ?

  • Hi Maggiej28,

    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.

  • Good luck with the appointment in October. Let us know how it goes.

    That's great news about not smoking - keep up the great work.

  • 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.

  • Thank you for the welcome!

    I am 57 years old and was diagnosed with Lupus/Sjogrens 18 months ago.

    I found it hard to cope with the change in life style. I gave up work in the B.R.I as a part time cleric. Due to the fatigue and pain and uncertainty.

    I am now a "house wife", even that can be hard at times.

    It's nice to read about other people and realize that I am not alone or as ill as some others!

    I do have pain most days. Very dry eyes and mouth. Spells of mouth ulcers.

    Bye for now.......have to try and cut the grass before it rains!!

    P.S. Sorry for any spelling mistakes....get a bit confused also.

  • Hi diagnosed with lupus 3months ago . Any help advice etc would be gratefully received. Seeing rheumy next month. Thankyou

  • Hi Newwine,

    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

    Many thanks


  • Hi Marie,

    I am sorry but we are not medically trained here, so we cannot advise you about your blood test results. Are you able to discuss this with your GP?

  • Thank you- I'm due to discuss it today with dr and have been referee to Bristol lupus unit. So hopefully things. Will be clearer then Marie

  • Hi I am new to This Forum, my Husband has recently been diagnosed with Sle Lupus.

    As we didn't know too much about this , I joined the forum to gather more info .

  • 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.

  • Greetings. I have been recently diagnosed with SLE I found this forum when I wanted to understand this condition.

  • 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!

  • Hi Alexandra, welcome to the community.

    Have you seen a consultant about your additional symptoms such as the dizziness, or is it just your GP who is treating you?

    I'm sure you will find a lot of helpful support and information on this site.

    With regards to benefits, you may want to look into applying for Personal Independence Payments (PIP)?

  • Yes, i was referred to the ENT, i am now waiting for an MRI to be done.

    Not sure about the PIP as i can do everything on my one, it takes time, but i can do it.

  • 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.

  • Hello,

    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.

    Thank you for reading this,


  • Hello,

    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...

    Thank you ahead of time for any help!


  • 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

  • Hi annzaay,

    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

  • Hi Lbirby61,

    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.

    I live in Scunthorpe with my child and husband.

    My personality has changed a lot.

    Have not worked since diagnosis.

  • Hi Ngozi,

    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...

  • Hi Paul

    Thanks for your warm welcome to the site.

    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.

  • Hi Ngozi,

    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.


  • Hi George

    I will like information pack send to me please.

    I will also like fasts heel about lupus skin, especially to my lower legs, ear & scalp.

    What is the best treatment for dry eyes? I am using systane eye drops when required.


  • Hi favour6,

    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/

  • Thanks Paul.

    I will email you.

  • Hi, I'm lmrd, I'm 45, and although tested positive I'm still awaiting a diagnosis??

  • Hi Imrd,

    Welcome to the community. I have responded to your main post, so I won't go into more depth again here :)

  • thank you so much for your reply

  • 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

  • Hi Susanfay and welcome to the community!

    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...

    Have you told your GP about these other symptoms?


  • Thanks I will get the information pack. My Dr just said it was probably part of the lupus and to mention it to consultant next time I see him

  • 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

  • Hi Marnie83,

    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.

  • I wrote a reply to this but it's not showed up has it went somewhere else?

  • Hi Marnie83,

    I can't see a response anywhere else I'm afraid.

  • 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??

  • Hi Imrd,

    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.

    Thanks in advance!


  • 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!!!!

  • Hi Carolina_

    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.😃👍

  • Hi Barbara,

    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...

  • Rosemk,

    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.


  • Hi rosemk,

    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?? 

    Love & peace Claire xx

  • 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.

  • Hi I'm Claire and can't wait to read up on this site as I'm being tested for lupus , I do have severe fibromyalgia or do I NOT ????? 

    Love & peace Claire from Basingstoke xxx✌🏼️✌🏼🌸🌸🌸🌸

  • Hi Claire,

    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?  

  • Hi Virginia70,

    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.

  • Thanks Paul_Howard .  I'm impressed by how long you have been doing your admin work for this site ... a real achievement!  Thanks for the link.  Virginia

  • Hi Virginia70. Thanks, I've been at LUPUS UK nearly five years and this community has grown a lot since then. 

  • Hi everybody. May I participate in this community from the U.S?

    My name is Jennifer and I live in San Francisco CA

  • Hi Jennifer,

    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.

    Thanks for reading x Lou

  • 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...

  • Thank you so much


  • ¢°=®¥=^€

  • Hi

    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

    That's me guys ..

  • Hi Wakeem,

    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.

  • Thanks Paul ,

    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.

    Thank you

  • Hi to everyone,

    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.

  • Hi Juesey,

    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...

  • Hi Paul

    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.

    Many thanks


  • Hi,

    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 :)

    Lara :)

  • Hi Lara,

    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.

  • Hi driven,

    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.

  • Such a valuable resource and friendly forum 😊

  • Hi ADXLC,

    I'm really glad to hear that you've found the forum so helpful. It really is a brilliant, friendly community here.

  • 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!

    All the best

  • Thank you so much!!

  • Hi Amyhulsey,

    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!

  • Hi 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.

  • Hi Oliviafaye,

    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.

  • Hi Lupus1963,

    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. 🤒

  • Hi Polly,

    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!

  • Hi Janetbj,

    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.

  • Having trouble posting justjan

  • This last one posted. My long post disappeared. Jan

  • Hi justjan1944,

    I'm sorry to hear that you are having trouble posting. What is the problem you are experiencing?

  • 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

  • Hi Beverley_F,

    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 :-)

  • Hi _lj_,

    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.

    If you ever need anything, just ask me :)

  • I hear people referring to SLE, but what is it? Thank you for any help you can give.

  • Hi 4373,

    'SLE' stands for systemic lupus erythematosus. This is usually shortened to just lupus or SLE because otherwise it is a bit of a mouthful.

  • 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.

  • Hi Clair1710,

    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.

  • Hi KateSarah,

    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 😢

  • Hi 3007,

    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.

  • Hi 3007,

    I'm sorry to hear that you are in such a difficult position. Where do you live? Are there any other rheumatologists closer to you who you could see?

  • 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!!!


  • Hi 777dove,

    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

  • Thanks for the reply and idea.

  • 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.


  • Hi pascalelupus,

    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.

    Thank once more


  • Dear all,

    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 LalSD,

    Welcome to the site. Thank you for sharing your story. Clearly there is a strong genetic connection for autoimmune disorders within your family.

    We look forward to your contributions to the community. Please feel free to ask me if you ever need anything. I'll do my best to help.

  • 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.

    Thank you.

  • Hi Mmafox,

    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.

  • Hi Gabrielle,

    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..

    Thanks for welcoming me here.

  • Hi Painfulme123,

    Welcome to the site. I hope that you find it a useful resource for information and support. If you ever need anything, please just ask.

  • 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 Sarah

  • Hi Sarah,

    Welcome to the site. Please let me know if you need anything :)

  • 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 .

  • Hi aries67,

    Welcome to the site.

    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...

    We also have our full range of publications available to read and download at lupusuk.org.uk/publications/

  • Thank you Paul :)

  • 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.



  • Hi Paula91S,

    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.

  • Hi runalong,

    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...

  • Thanks Paul i will take a look at that.

    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 :-)

  • H Sophie,

    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

  • Hi LouGD,

    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...

  • Hi,

    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.

  • Hi Jhavibha_2013,

    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.

  • Hi Shaycruz2,

    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😬🙂

  • Hi Lannsutt,

    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.

  • Hi Ellie633,

    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.

  • Hi QueenSamantha,

    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.

  • Hi everyone I am Essex and had

    sle lupus

    rheumatoid arthritis

    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


  • Hi Mumzie247,

    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.

  • Hi,

    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?

    Thank you in advance


  • Hi Damien1975,

    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 .

  • Hi amandafeelsrough,

    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.

  • Hi I'm Gemma

    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?


  • Hi Gemmasailments,

    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...

    We also have our full range of publications available to read and download at lupusuk.org.uk/publications/

    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.

  • Hello..ive just been diagnosed with SLE and was just wonderingif there is any support groups in north wales?

  • Hi Annap26,

    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

  • Hi MarthaGogarty,

    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.

  • Hi mariluzl,

    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.

  • Hi Iranianman,

    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 .

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