Lupus info needed please: Hi everyone, I am a... - LUPUS UK


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Lupus info needed please

diurno profile image

Hi everyone,

I am a medical student and in the process of writing a project on systemic lupus erythematosus, however I stubbled upon a couple of questions that require the insight of an expert...hopefully you.

So here it goes:

-Do you find that you get any support from community matrons? Or specialist nurses?

-How often do you go for a follow up with your rheumatologist? Or GP?

-Do you use support groups often and do you think these help?

-What is your biggest fear as a lupus sufferer? e.g. are you weary of going outside when it is sunny?

-What was your first reaction following your diagnosis? Were you scared about something in particular?

Many many thanks!

40 Replies

Hi there. Was diagnosed with sle and rauynauds in November 2013. The doctors loved me as I am a rear case they have seen. Was a superstar when I was taken in to hospital probs had every doc from different departments come see me.

- I see my register at least once a week or every other week as I'm still showing positive Ana and DNA and whatever else after nearly 9 months. Still having a lot of problems and need to find medication that works so I can come off these steriods. My GP I don't bother with as I don't get to see him or his wife much as there always of or something so when I do go it's normally a lo come that knows sod all. All they do is read my notes back to me like I don't know what I have and nod there heads saying hmmm. Even had one laugh at me because I didn't know if I wanted sun cream or sun lotion as it was my first time getting factor 50 he didn't know and had to get his medical book out.

- I don't see a specialist nurse. Only speak to her if I call the nurses line when I'm not good. She is lovely and always happy to help. If I don't get through I get a phone call back within 24/48hrs and brought if to get seen next day. Soon as my name flags up there on the ball so I must say I am lucky.

- I do not use support groups as I know of none. If there was I would use them as it would be nice to meet other people with the illness and hear about their life's, how they cope, the changes they have made, medication their on ect. Just be nice to not feel alone and be able to talk to people that understand in a sense coz no one has the same lupus.

- my biggest fear is having another major flare up and maybe actually dying this time. Also not being able to have a half normal life as at the moment don't seem like I will consantly one thing after another at the moment and also passing the genes to my children or that I might not be able to have children.

- Erm first reaction was like ok I've got a rare illness just got to get on with it lol. I was dosed up on a high dosage of steriods as I was very ill when I got admitted in hospital so was in limbo. But I felt numb, my heart sunk and my world come crashing round me. Once I come round sort of and things we're explain bit better one thing that bothers me alot is that I have to plan to have a child when it should be a natural thing to happen and life changes. I was such a active million mile hour person with loads of energy always on the go now I'm lifeless have no energy, in pain most the time, tired all the time amongst other stuff. I just miss being me and lanky nutty me.

Hope this helps.

Hi Diurno,

good subject choice!

I had never heard of a community matron before this post, and I only discovered rheumy nurse this year.

When I'm not in a flare I see the rheumatologist 2 x per year but as I'm in a flare I have seen him every 3 months and the rheumy nurse once a month.

Support groups - where are they? if they are not linked to this site I don't think that there are any.

My biggest fear on diagnosis was early death.

I hate the summer, I can't cope with the heat or go out in the sun. Every one thinks I will feel better if I get some sunshine gggrrrrr!

My first reaction to diagnosis was - never heard of It!

The thing I'm most scared of is losing my house, I'm the main wage earner and have been off sick for 7 months and my sick pay is about to run out.

misty14 profile image
misty14 in reply to MargaretGail

Hi. Margaret Gail

Sorry to read that you've been off work 7 months,a big worry for you . Could I suggest you visit your local Citizens Advice Bureau as they will sort out your sick pay entitlement. They will also run a benefits check to see what other help you could be entitled to especially as your the main breadwinner and you must be struggling to pay bills.!. Also if they recommend you apply for benefits like ESA or DLA they will help you fill in the forms as they have to be done in a certain way to maximise chances of success. Hope I've been helpful ? X

MargaretGail profile image
MargaretGail in reply to misty14

Thanks Misty, I keep thinking I should go see them. I just need to motivate myself and go.

Paul_Howard profile image
Paul_HowardAdministrator in reply to MargaretGail

Hi Margaret,

There are support groups throughout the UK. If you wanted to let me know whereabouts you live, I could let you know which would be your closest.

Hi Paul, I'm in the York area.

Paul_Howard profile image
Paul_HowardAdministrator in reply to MargaretGail

Hi Margaret. I'll send you a private message with contact details for the Yorkshire Lupus Group.

We have No community matron that knows about Lupus, but there is one at the Sheffield Hallamshire hospital you can contact. I see my Rheumy 1 x2 a year but he lets me e.mail him if I have any problems and gets back to me the same day. He is Brilliant. Our Sheffield Lupus group meet every two months and they are Not just from Sheffield, the come from Hull, Chesterfield, Nottinghamshire and Leicester. And it is just great to be with people who 'Understand' I also use the Lupus uk. facebook page and that is ALWAYS helpful. Biggest fear is being in a wheelchair and my hubby not being able to cope and having to go in a home. First reaction after 20 years of not knowing what was wrong was RELIEF, sound odd but when you have been ill for a good part of your life (I was not diagnosed 'till I was nearly 40) it was good to know what was wrong and start some treatment. I am now 67, had to retire early because of Lupus, but for the last 35 years have gone swimming 5 days a week to keep my joints flexible.

I admire what you are doing and as a person with Lupus SLE we all want people to Understand and help.

Thank You. Feel free to contact me again if you need more help.

Gosh hazel: I so identify with your reply: it's all so close to my experience & feelings about my SLE etc...I'm 60 & was forced into early retirement by lupus too etc etc, but was only UK diagnosed 3 going on 4 years ago...and the feelings of RELIEF haven't let up....and possibly the BIGGEST aspect of this relief is that NOW my health professionals mostly ALL show me such respect and attention instead of shrugging & telling me that my weird health issues are normal


- I do have a fab specialist lupus nurse, who rings back within 24-48 hrs. i contact her only 2-3 times per year, usually

- i see my gp maybe 10 times per year - usually to discuss recommendations from clinics or to ponder what to do about some problem or other. but i attend surgery at least 1x per month for mycophenolate monitoring blood tests

- I V MUCH DOUBT I'd ever be able to get to my NHS rheumatologist or her colleagues by email

- I can't swim due to my skin conditions & cervical spine damage

- I don't use lupus UK's Facebook page, and I stopped regular support group attending in my 3rd year since diagnosis, but I do attend our events & I read + contribute to our newsletter. I try to visit this forum every morning first thing: it is my LIFELINE, makes all the diff to me: I've spent a lifetime feeling increasingly alienated & isolated c/o unrecognised infant onset lupus making me seem a hypochondriac (I was diagnosed growing up in the states but my mother kept this secret until Brit drs finally figured me out in 2011). Decades of making a big effort to keep smiling & calm around puzzled people who thought was just a malingerer was exhausting & depressing

- I'm registered in the BILAG study, so I see the research team at my hospital several times a year, which helps me feel much less vulnerable to the vicissitudes of SLE

so, diurno: I'm with hazel on all other points...and will add that:

- Due to my reactivity, yes, I have had to avoid the sun all my life, and even more so now I'm in lupus treatment because I'm on mycophenolate which predisposes us to skin cancer. I've been taking high dose omegas & vit D for years to compensate, but I'm v close to osteoporotic...I also have to be v cautious about touching almost anything outdoors due to my reactivity...which has been tricky all my life due to my career in horticulture & my interest in ecology...but all that is not what i'd call a BIGGEST fear

-probably the biggest anxiety in the back of my mind is due to the neuro cerebral aspect of my version of lupus. i've had too much therapy to let anxiety over this get out of control. These aprticular symptoms are responding well to daily myco, and pred tapers as required, but so far the NHS hasn't tested me enough to understand the precise nature of my symptoms, although years ago MS was tested neg. My feeling is that my lifetime of lupus progressing untreated means this aspect of my condition is more entrenched and debilitating than it might've been with systemic treatment...but, on the other hand, I've avoided long term steroids and its side effects....seems to me, we can't win: both lupus & its treatment are problems for us

- of course, I also attend a host of other NHS clinics for annual monitoring, mostly, now....all mainly due to SLE related issues including diagnosed secondary conditions, some aggravated by the inappropriate treatments the NHS has given me over the decades

I'd add that because I've spent 50+ years feeling 20yrs older than my actual age while conscientiously coping with my version of lupus mainly via lifestyle management (pacing activity, meditation, nutrition, exercise, counselling, orthotics etc etc), I have become TOTALLY at ease & delighted with taking full-on daily prescription meds that REALLY HELP give me more of a life....and this is after years previously on long term prescription NSAIDs + analgesics + GI + gyn meds that mainly turned me into a zombie or created other problems. If i were to let anything really scare me, it would be the thought of returning to the sort of treatment i was getting in those bad old days....having to cope again by my own wits/lifestyle management, watching myself deteriorate despite all my efforts

I could go on & on

Barnclown profile image
Barnclown in reply to Barnclown

PS it's good to find professional interest like yours here. Seems to me your generation of medical students needs to be more informed about and alert to autoimmune conditions generally than earlier generations seem to have been....and listening to patients can help.

my husband had crohns diagnosed while at university, and we've followed the related literature closely for, between us, we've seen the medical establishment's consciousness grow re crohns & lichen Sclerosus, and now lupus...and we think we've seen the frequency of diagnosis increase....and not just because diagnostic skill is greater....our feeling is that autoimmune conditions aren't going away....if anything, they seem of greater prevalence & incidence....and patients are now able to become more informed than many of the physicians confronted with autoimmune conditions seem to be....

So: go for it, diurno

Hi I was diagnosed with sle in 2004 after years off tests and speculation so was glad to get a firm diagnoses the only nurses I get support from are our practise nurses I see rumi every six months and gp quite a lot more the sun does affect me so a good cover off factor 50+ goes on stay out of sun peek times I had to give up work a year ago , and find I have to pace myself in what I do to avoid to much pain and fatigue .

Hope that is of use to you g

I have Lupus SLE I get virtually no support. There is no Community Matron, I see Rheumy 2 times a year if I am lucky, as far as I know there is not a Lupus Nurse and GP's know nothing about Lupus except for one doctor which unfortunately is based mainly at a different surgery (which is very difficult for me to get to) than mine.

I cannot take the malaria drugs they give you to treat Lupus so I get no treatment either.

I have really just to get on with it. I suffer a lot with fatigue, and most of the time very bad brain fog. I have to constantly write notes for myself to tell me what I have to remember to do.

I had never heard of it when I was diagnosed and not really given much information about it. Found out about it on an American site on internet which gives a lot of information. On this I found out about Lupus arthritis which answered a problem I have with my hips and other joints. Rheumy kept sending me for x-rays on my hips and they came back ok but she did not know about Lupus arthritis which does not show on x-rays.

I have got really no one in the medical profession that knows about Lupus.

Paul_Howard profile image
Paul_HowardAdministrator in reply to custardpot

Hi custardpot,

There are other treatments available for lupus besides antimalarials. Have you discussed any of these with your consultant?

Yes I was told there was another treatment but was refused it as blood tests were showing a problem with my liver that was caused by Statins for high colestral

In response to your questions I was only diagnosed a few month ago so hope this helps get you results from across the board,

I do see a rheumy nurse but mainly because I have rheumatoid arthritis along with lupus but they offer lots of advise and support if you need it between appointments with the rheumatologist.

Follow up appointments with the rheumatologist as I'm newly diagnosed are every 6 months also have appointments with the haemotologist every six months too.

The only support group I use is this site as I'm unaware of any other support groups.

My biggest fear is not knowing what's ahead of me as I don't think the illness has been explained and I'm finding most of my information out from this site.

My first reaction being diagnosed was relief that there was actually something wrong with me

Paul_Howard profile image
Paul_HowardAdministrator in reply to bevjane74

Hi bevjane74,

If you'd like details of your nearest support group, let me know whereabouts you live and I can provide you with them.

Gateshead, near Newcastle upon Tyne - and thank you

Paul_Howard profile image
Paul_HowardAdministrator in reply to bevjane74

I'll send you a private message with the contact details for the North East Lupus Group :)

Bevjane74...I am also in the gateshaed area. I was diagnosed 1 1/2 years ago. Was a fluke as I had broken a toe then started getting bruises all over. Platelet count down to 1. Saw haematology doctors at least 1 a week where they did blood test and started finding out some were positive. I have a great rheumy doctor and at the moment I see him ever 3-4 months as I am a rare case they doesn't really show physical signs of sle and aps but all my blood work points in that direction. I am cery happy with my care.

Hello Diurno, happy to help with your questions:

1. Don't have a community matron or anything, so no support.

2. Saw rheumatologist on health insurance initially, then insurance stopped covering me so GP sent me through NHS, rheumatologist then referred me to the Lupus clinic and i have an appointment next month following 5 months wait. Don't know how often I shall be seen after that. GP is dealing with current skin issues (malar rash etc)

3. I use this site and it is very helpful indeed. Without it I would have no support.

4. Biggest fear is the long-term impact of taking Plaquenil and and that my current drug regime might stop working.

5. I was worried about potential psychiatric involvement.

I hope this helps and good luck with your research.


Me: SLE, Cerebral lupus, Antiphospholipid syndrome, reynaulds and a renal transplant in 2004. Diagnosed in 1999, aged 19. very quick diagnosis. very lucky

-Do you find that you get any support from community matrons? Or specialist nurses?

My GP is superb and understands everything, I have worked hard to stay with her and the practise despite moving house... but no, no nurses have nothing to do with my treatment.

-How often do you go for a follow up with your rheumatologist? Or GP?

I see a Lupus Specialist (90% of the time the same doctor) every 6-8 months but I have a phone number and email address in case anything needs to be addressed in the meantime. I see my transplant specialist team (inconsistent doctors but all Tx specialist) every 3-4 months with bloods a couple of days before to make sure we have the most up to date information. I see a skin cancer specialist every year (an NHS initiative, preventative - I don't have skin cancer but the risk is increased because of the drugs). I only really see my GP if there is something immediate wrong. getting them to talk to each other is the tricky part!

-Do you use support groups often and do you think these help?

I don't use any support groups beyond this forum. I am stupidly stubborn and think i ought to be able to deal with things myself!! I understand the support this offers but for me, making friends because you have an illness in common feels odd so i won't join face-to-face groups.

-What is your biggest fear as a lupus sufferer? e.g. are you weary of going outside when it is sunny?

It's recurring nature, the fact that it can come back anywhere at any time. My fear is losing my independence, not being able to work... And losing any function from my brain!

-What was your first reaction following your diagnosis? Were you scared about something in particular?

I was diagnosed very quickly, really within 6 months or so of getting first symptoms. the diagnosis meant very little to me, I was 19 and determined to beat anything that came my way. however, my initial fear was other people, they Google it and assumed that i couldn't go out in sun, some asked about my life expectancy (like that would be easy to answer if I told them I would die early). I have mellowed a bit now and I understand that this is the only way to help educate others...

Hope that's relevant and not too waffly! Good luck and thanks for choosing SLE to study - we need you guys!


Hello, I see my gp every 3 months for blood tests review,Opthamologist every 6

months and Rheumatogist yearly unless change in blood results or flare up.

My biggest concern would be not being able to continue to work as it is exhausting at times.

I avoid the sun as I am extremely sun sensitive. Even a small time in my car with sun through windows can trigger it in summer! I also found it was a relief to be diagnosed so at least I could start to treat it. Only two years of testing before diagnoses but felt like a lifetime. My gp is marvelous and is my support network. I am very lucky.

Hope this helps!

I was diagnosed in 2001 and to begin with I received a lot of support from my GP and the hosp., however I then moved to N Yorks my first doc was great, regular blood tests for kidney function etc. Hospital trips I got full bloods and took the results with me. Then I had to change surgery, what a carry-on to get my bloods done, they wouldn't do it without a request from the consultant, however much I tried I could not talk to anyone at the hospital. The nurses would not talk to my last doctor to confirm this. I actually had the original request 'bags' from my consultant but the surgery would not accept this because it was dated 2001. In the end I e-mailed the consultants secretary and she wrote a confirmation letter. What a complete waste of time and simple to solve with a patient 'passport/record book kept by the patient, similar to the type of thing a baby has. I do keep my own file of results etc. I do not feel that I have one designated person to oversee my care, I get so sick of repeating the same thing over and over again.........

Two years ago I was told by my consultant (N Tees) that there was nothing much wrong with my bloods so if it was the same in 12 months then he would not need to see me again. I was sent an appointment, I traveled the 70 miles in winter weather to be told I didn't have an appointment there was no clinic that day, likely I had my app letter with me so I didn't feel a complete fool. Told didn't want to see me any more but to get in touch if I need them, okay I already know how easy that is, no telephone no. given.

Having been unwell of late I went to GP several times and all he offered was pain killers. I asked to be referred to Chapel Allerton but when the appointment came he had simply referred me to a local rhuemy.

My GP has now retired and when I asked to be put under the care of the GP who has knowledge of dealing with SLE the receptionist rather snootily replied 'I'm sure they can all cope with your illness', which is not true, no-body is an expert in everything, I always admired the docs I come across who say, 'I don't know whats happening here but I will refer you on', it gives confidence when they do treat me.

First reactions ...... My SLE started as suspected pleurisy and as my GP kept sending me to hosp they kept sending me home, I met some awful doc/consultants, the rude arrogant who don't actually speak to you. Eventually my GP who knew it was serious but not what it was sent me to his colleague who was not a rhuemy but did a battery of tests and eventually sent me to Dr Spickett who made the diagnosis. At first I was relieved as my imagination had gone wild with what it could be and I didn't really know what Lupus was, But then about a month later I started to get tearful and depressed this followed 18months anti depressants and good support from GP

Bit of a ramble but I hope there are bits you can use, like most things the NHS is like the 'curate's egg' good in parts but mainly due to individuals, for example the nurse who came in for an hour on her day off to do my lung function test so I wouldn't have to do the 140 mile round trip twice.

Feel free to contact me again if you need anything else

Lupus is like any other long term medical condition and reading the posts shows how everyone deals with it in their own way.

I was diagnosed October 2012 after being rushed into hospital with pancreatitis and no obvious reason to cause it. I also have sjogrens, raynaulds RA, hyper mobility, odema, sticky blood and under investigation for coeliac.

I don't worry about any of the above as what will be will be and life is too short to worry about my condition.

I started seeing the consultant every week but over time it is getting longer between visits latest is 6 months but it is on the proviso that if anything goes terribly wrong I go immediately to the gp. (More than once, I have been told by my gp this is a serious condition and I must go and see her when unwell) this is the area I struggle with.

There is a specialist nurse attached to the rheumatology department but I haven't had the need to see her yet.

There are support groups, here, on Facebook and lupus uk they are all fantastic for support if/when needed. I always read the posts but have not actually been to a meeting, however it's comforting to know that there is support if I need it.

My difficulty is when having a flare or feeling unwell knowing which condition has caused it and how to treat it as I don't like running to the surgery. Hence why I keep being told, this is a serious condition!

Good luck with your paper

I'm from Ireland so I'm not sure if I'm usable because we don't have specialist nurses or community matrons that I'm aware of so I have to answer no to question 1.

Q2 - I got to my rheumatologist about every 3-6 months depending on how my last appointment went, how my blood work looks and how I've been feeling. I've been in a pretty long period of 3 month cycles at the moment because I've been experiencing mini flares and opportunistic infections. I go to my GP when I have an infection so about every 2 months.

Q3 - There are no support groups that I'm aware of in Ireland, the Lupus service over here is woefully small from what I can gather and we tend to get lumped in with other services like Arthritis Ireland and such. I don't think I would use them because I've never felt the need; online communities such as this one work pretty well for me and I have a supportive family structure for when I need to talk.

Q4 - Dying early from a silly infection that gets out of control Alternatively, if I don't die of an infection or flare, being left crippled and consigned to long term care when I'm older because of the damage to my joints and muscles. Also, not being able to achieve my goals due to the impact this illness has on my life (including travelling and having children).

Q5 - I had been suffering with Juvenile Dermato Myositis for 5 years at that point so it was just a name change, nothing really changed for me treatment wise although some of the symptoms, especially the fog, caught me off guard and are tough to cope with. As for scared, no not really. I knew my mortality risk was slightly increased but I was so used to the meds and hospitals and doctors and tests that it didn't really faze me.

Paul_Howard profile image
Paul_HowardAdministrator in reply to IrishLupie

Hi IrishLupie,

There are support groups available in Ireland. We have a Northern Ireland Lupus Support Group and the charity, Lupus Group Ireland have groups that meet in the Republic of Ireland -

1. I see a specialist nurse at one of the hospitals where I live once each year, about half way through the year and she's quite supportive. Asks the usual question - "how are you?" and I struggle a bit to reply. No other support that I know of, although I was told by the first hospital doctor I saw that there are groups that meet regularly to talk about their problems and she gave me a phone number.

2. See the rheumatologist once each year. My gp? hardly ever and never in connection with SLE

3. I pop in here now and again and have found there are others suffering with this somewhat debilitating disease, its helped me feel less alone, and I meet with the Sheffield group every 2 months for a meal which means I get out of the house every 2 months and talk to fellow sufferers.

4. Think my biggest fear is that the illness will affect my lymph glands and finding myself with a fatal illness. I want to see my grandchildren grow up.

5. Relief was my first feeling and as I left the hospital a huge weight lifted from my shoulders as I thought I had cancer. I didn't know much about Lupus back then, had never heard of it. I was given leaflets to read that made a lot of things fall into place. I'd been ill for some time and had no idea what was wrong....apart from cancer as it runs in my family....My gp never took me very seriously when I tried to tell her I wasn't well so I gave up. Diagnosed in 2005 at the age of 58 some time after after collapsing from internal bleeding when a locum doctor sent me for proper tests.

Hi Diurno.

I've never heard of a community matron but I was given the phone number of a rheumatology nurse working with a couple of the rheumatologists at one of the major hospitals here. However there was no explanation as to what that person actually does and how they might assist me. In practice I've found that I can call if I have worries about any symptoms I'm having and then they advise me, normally after consultation with my rheumatologist.

However I generally find that I link in with my GP, too, even if I think it's Lupus related - she is incredibly supportive and I think it's important to keep her in the loop. But this does mean I am essentially using two lots of NHS resources. I physically see my rheumatologist, at present, at 4-6 month intervals.

On joining Lupus UK I was automatically 'registered' with the local support group, in a major UK city. They are very well organised and offer local contacts to call if you are having a bad day, just need a chat, etc - a service for which I am enormously grateful, and also hold monthly meetings. Unfortunately I am a long way away which makes regular attendance difficult. I think talking can help me but, equally, I find too much focus on my condition/symptoms unhelpful - unless it's with a clear aim in mind e.g. more effective treatment; a chance to 'unload' emotionally so that things no longer seem overwhelming.

Biggest fear - being very unwell and the attendant stress for my husband, family and friends.

After diagnosis - relief. I had been unwell for years, was wrongly diagnosed (with M.E.) and pretty much ignored by the medical community until I was critically ill.

Hope your project goes well!

I don't use support groups. I rely on Lupus Unlocked to get my information or the Internet. Lupus Unlocked is a great help to me. Being ill again and also being in Hospital which i spent a lot of time in the pass there and also an early death. I enjoy the sun as it makes my body feel better. I hate the cold, it makes my legs hurt a lot especially my hips. My first reaction when I was diagnosed with Lupus was that I didn't want to be ill. I thought that it was something that would maybe last a year not the 15 years that I am enduring. It was not until that I got more knowledge about lupus that I realised that it would be lifelong. I was scared about my limited life. Not being able to do all of the things that i was used to doing. Having to rely on other people who don't understand Lupus and think that my kidney Transplant due to Lupus is a cure. Depression is something other people can't understand it can take over your life if you let it.

I only now go once a year, previously 2-3 times. I have lupus type symptoms but have not been diagnosed with it just APS (anti-phospholipid syndrome). The whole experience is very scary and no I don't feel there's much support at all apart from this fab forum! I have cried buckets over this! There's just not much awareness of it either so people (friends & family) don't really, "get it" so it's very frustrating. Many, many thanks for choosing to do a project about Lupus!! :-)

Many many many thanks for all the quick and detailed replies! I will try to incorporate as many view points and stories into my report. I shall post again if further questions arise while I carry on writing it but I am glad that some people are finding out about local support groups and services available to them through other members.

Sincerely grateful. Thank you!


1. Specialist nurse isn't a nice person, and doesn't actually have any training in lupus! She's a specialist 'rheumatology nurse'...?! I avoid her at all costs and see or talk to the nurses in my rheumatology department of hospital, where i'm an inpatient and out patient often.

2. see Rheumatologist every 3 months but can ring his reg or secretary at any time.

3. I joined Lupus group ireland but havent had much from it so far.

4. I am TERRIFIED of going out in sun, I have a uv umbrella, sunblock, and blinds for the car now, but i had the most awful 2 months after sitting in the shade at a family bbq when i was just newly dx'd and knew nothing

5. Devastated, I already have Ankolizing spondyiolitis (sic), crohns, vasculitis, pern anemia and addisons secondary. I feel my life is over sometimes, i loved the sun so much and now i cant even have that pleasure, so i tend to feel very sorry for myself sometimes


My older sister battled SLE for nearly twenty years before she succumbed to it. I was diagnosed with lupus seven years after I lost her. Before that I led a normal, healthy and active life.

I hope the following answers help:-

1. I did have home visits by community nurses over a period of a few weeks after I had surgery to remove a huge cyst under one arm. The special dressing needed changing daily until the wound healed. But after that, there was no ongoing support. I was introduced to the resident connective tissue specialist nurse, but really she was a first contact point when things flared up. As nice as she was, she didn't really provide any real support as such in my case.

2. Only when things flare up

3. Yes, the local group meets once a month. Not a huge turnout, but support groups are great for sufferers who are not as lucky to have a close network of family and friends who they can talk to about their condition

4. I suppose becoming really ill with something that really impairs the quality of life. I've had crippling joint pains that meant I could not get out of bed, use the loo, walk, be independent. The prospect of a life like that was scary. In a later episode, all of my skin fell off. That was scary for me and anyone who saw me. I've also had temporary bouts of paralysis. On one occasion, my legs just gave way as I got up out of a chair. As I collapsed, I crushed one of my legs breaking my fibula. Worse still, I couldn't feel both legs for a couple of hours so l couldn't even get help. As the minutes ticked by, I feared I had maybe had a stroke and lost permanent use of my legs. In another episode, the retina popped off in one eye. The darkness of blindness is very scary. The thought of being completely blind and being dependent on others probably scares me the most.

5. I was upset and scared having seen everything my sister went through. I didn't know how to tell my mum. My other sisters were freaked out too. Two siblings both lupus sufferers. Lightning striking twice. It affected my skin initially, but when my health quickly went into meltdown we all wondered how systemic things would be. My late sister had a stroke, kidney failure and heart problems. We all feared, and still fear, if I'd go through the same. I have a phobia of needles, so every time I have a blood test I'm a wreck. That despite having had so many.

Good luck with the project

-No support from specialist nurse. Had not heard of community matron before.

-Rheumatologist 6-8 monthly. Manage own symptoms for best part by doing nothing for a few days.

-Local LUPUS UK support group was lifeline at diagnosis. It continues to offer support.

-Biggest fear: heart attack or early death.

-Diagnosis came after 2 weeks in hospital, eliminating so many other illnesses. Relieved to be diagnosed and put a name to illness. Scared kidney problems may reappear, worried about heart and lungs. Also worried about weakness after 4 weeks in hospital and weight dipping under 7 stone.


I was diagnosed in 2004 with SLE and also more recently they tell me I have fibromyalgia.

I am aware of a lupus nurse that I can contact if necessary, usually if I need an earlier appointment or for some advice.

I find my GP, and pretty much every other GP I have ever seen, very reluctant to do anything with regards to my medication if I were to go and see them during a flare without them first consulting rheumatology. This can be quite frustrating as it is difficult to get a rheumatology appointment at regular intervals let alone in between when you are having a particularly difficult time. However the GP I saw last time I had a bad flare was on my side and very persistent with rheumatology meaning that I was able to see a doctor quite soon after I started to feel ill (worse than 'usual'). Of course this particular GP was not a regular GP that practices at my surgery and was apparently just passing through, a problem I have had a lot in the past ten years with rheumatologists. For the first four years following diagnosis I was seen in paediatric rheumatology where you are very well cared for with supportive specialist nurses, regular appointments etc. Nowadays I am currently supposed to be seeing a rheumatologist every 4 months however the time between my last two appointments was almost a year and in the two years since I moved and have been attending the clinic I am currently I have had three appointments with three different doctors depsite having had two flares in this time.

I find this site very useful as the experience of others with regards to symptoms or medication for example, is a very important source of information that would otherwise be unavailable to me.

The worry of when I will next have a flare is nearly always at the back of my mind. I am also very concerned about the effects of the medications I am currently taking or have taken in the past. The more time goes on the more I have come to accept that certain aspects of my life have been different due to my illness/medication and that there is nothing that can be done about this now. This just leaves me to worry about how my life might be affected in the future! Another worry is how much my family worries when I ill.

When I was diagnosed I was scared that my life would be ruined. That may have been the flare I was in the middle of or the fact that I was being a dramatic teenager but being told I had a disease with an un-pronounceable name that I would probably always have and would have to start taking steroids and other medication was a bit too much for me to cope with. As someone who was luckily diagnosed quickly (within a few months) and was being treated by paediatrics (far better care of course) there wasn't a lot of 'we think its this...', 'now we think its this, were going to refer you to here and send you here for this test' and so I never really felt the relief of finally getting a diagnosis.

I hope this helps!

Hi ,1no I don't get any support from any nurses of any kind ,live in mid wales .

2.because of staffing shortages my rhummie team has a out patients day at a cottage hospital on a Wednesday 3 doctors went down to 1 one became ill and the other got a better job offer it left consultant running whole clinic on his own , so I went from 3 monthly appointments To no appointment for 9 months and initially was told by GP that I had to ring for appointment with consultant by GP ,but she hadn't been informed about the issues with clinic ,eventually I became so unwell ,in jan that is went to the GP I desperation for help who took one look at me , and signed me off work that was in jan I lost my job last week as I am still not fit to work ,

3.there are no support groups in rural areas this site has been my life line , even the GP ask what advise I get on here the people on this site are the experts we help each other cope , it's not the health service fault it is underfunded and that government would rather give themselves huge pay raises ,fund wars , thet forget why they are in these jobs ,there to busy making sure they will be in a position to write there memoirs so they can line there own pockets .

4.i wake up in the morning if I have been lucky enough to sleep , and wait to see what's hurting ,how is my head , then it's a case of see how I move depending on how I move first things depends on how the day progresses , and as much as I love to see a beautiful blue sky ,if it already hot ,then I haven't got a hope , in the summer I also have raynaulds so you can imagine the winter brings it's own problems pain ,pain and more pain ,I can't control my temperature ,the only time of year that brings me any piece is autum , at least last year everything has changed for me now ,my life is a nightmare in so many ways ,but at least it's not cancer .

5.the word lupus used to be a "house " joke in my house because of Hugh Laurier if he didn't know what it was it was sarcoidosis or lupus. My ex mother in law has sarcoidosis , and guess what I get lupus ,it's not a joke anymore it's a nightmare. Ever felt you were in a bad dream and any miniute you were going to wake up. That's lupus.

Hope this helps . Good luck ,

If you get successfully and want a Guinea pig let me know .

Hi Diurno,

I am so grateful that you have been assigned this project, the things Im about to tell you are things that a good majority of Lupus fighters like myself have most likely experienced as well and its so important for our medical proffesionals to understand! I must say before going any further that certain things I say are not pertaining to ALL physicians but a good majority. Im basing my answers from personal experience as well as fellow lupies who are consistance within their experiences.

Question number 1: My first symptom was Raynauds Phenomenon. With my first initial visit to my GP I informed him my mother was diagnosed with Subacute Cutaneous Lupus at the age of 22, my grandfather and great grandmother both suffered from blood clotting disorders also known as "Sticky Blood" and DVT and that my twin sister suffered from eczema and a mild form of Raynauds. Even after informing my GP of my family history and that obviously autoimmune disease runs rampant in my family, he continuously downplayed the pain I was suffering from and his method of treatment was telling me to wear gloves and take tylenol for my fever. The severity of my Raynauds pain was beginning to intensify and new symptoms started to appear such as mouth and nose sores, migraines, and violent waves of nausea that would not got away. After multiple visits to him hoping for relief and answers to what could be happening to my body he eventually referred me to a Rheumatologist, but it felt like it was almost an attempt just to "shut me up". I had to wait 4 months to get into the rheumatologist and long before then i was really beginning to suffer. I then seeked the opinion of an Internal Medicine Physician who for once agreed with me and felt that something might possibly be happening. I then adopted him as my GP. He perscribed me medications to help with the raynauds, stong antihistimines to help with the rashes I was starting to get upon going into the sun, tablets to help with the nausea and an oral gel with prednisone to help with my mouth sores. I finally saw the Rhematologist who pretty much made a mockery of me and made me feel as though I was wasting there time. They told me I was just depressed and sent me on my way with a packet on Raynauds and concluded since I had a Negative ANA there was no way I could have Lupus. Ten minutes after telling me theres no way I have Lupus the rheumy told me I should go to a Lupus support group. I was so confused and irritated!! One day I ended up in the ER with symptoms of a stroke. I had a CT done and I was clear, however the ER doctor believed I was now experiencing Periphal Nueropaty. The ER doctor was suspicious as to what could be causing my symptoms and told me to talk to my GP immediately and get into a Hematologist for testing. I tested positive with Protein C Deficiency and Factor 5 Leiden Mutation (The same blood clotting disorder my grandfather and great grandmother had also known as "sticky blood") I was then put on adult aspirin and scheduled for a MRI. The MRI suggested no signs of TIA, so the hematologist referred me to a Neurologist. The Neurologist concluded something was attacking one side of my brain mimicking the symptoms of a TIA. The Neurologist was appalled that I wasnt already diagnosed with Lupus and felt bad for me. She said she wanted to help treat me but without a diagnosis from the rheumatologist she could not help me with anything. At this point, Im feeling like half the doctors are on my side and the others think Im a huge joke. It was absolutely disappointing, heart breaking, and made me feel completely hopeless. One night I began having sever pain in my chest where my sternum was (waxing and waning, stabbing and dull). No matter which way I sat or layed down I was in so much pain and it was getting worse by the hour. I felt like a semi truck was sitting on my chest while at the same time someone was shoving and twisting a sharp knife into the middle of my chest. I couldnt take anymore, I drove to my moms at 6 in the morning. I had been balling all night from all the pain and all my symptoms were waxing and waning all at once. My body was constantly fighting and trying to recover. I told my mom if I die right now Id be okay with that because at least Id be put out of my pain. I couldnt get in to see my GP, however I talked to my GP and he told me to go to the ER immediately. However my mom having lupus and have had experienced pluerisy in the past and felt that I should try and call the rheumy first. The rheumy wanted to see me immediately. That day, I was diagnosed with Costochondritis and SLE. I think its disgusting that people have to suffer so long to get any kind of relief. Thank God I didnt die before getting the diagnosis.

Question 2: Rarely ever do I see my Rheumy. After my diagnosis she put me on Plaquenil and Prenisone. One day I woke up completely debilitated and feeling an overwhelming amount of physical & whole body fatigue. All my points were bright red and immovable, (knuckles, knees, elbows..ect.) All symptoms were flaring hard core. It was definitely the sickest I had ever been. After trying to get ahold of my rheumy for 3 days she FINALLY called me back and said I wasnt responding to the prednisone and placed me on a medrol pack with no instructions on what to do when the pack is finished. My GP referred me to a rheumatologist of HIS choice and not the old GP's. Im still awaiting an appointment with her. I have been waiting 6 months. All the specialists I see are in shock by the "treatment plan" I currently have. So as of now, every doctor besides the rheumy who is supposed to be the one treating me, is actually treating me until i can get into the new rheumatologist.

Question 3: Online support groups have worked very well for me. I am new to this disease and I am 22 years old. Seeing what others who have lived with Lupus longer have to say about their similar struggles and learning their coping methods has been very positive for me. Autoimmune diseases are so different and mysterious its always good to know someone else out there knows exactly how you feel.

Question 4: Biggest fears are kidney failure and not being able to live a full life especially since I am still so young. The sun is my enemy. No amount of big hats and sunscreen can keep the UV's from attacking if they want to. I always get very sick when I go out in the sun. Just from walking from the parking lot into the grocery store can bring on such an overwhelming sense of fatigue, I feel like my legs are going to give out from under me. I often describe "lupus fatigue" to loved ones like so:

"Its like trying to walk in half dried cement." Your mind want so much to go but your body is physically disabled

Question 5: My first reaction following diagnosis was thank God! I finally got answer. I knew what I had all along based on my family history of Lupus and Autoimmune diseases and my symptoms matched perfectly. I was so relieved that finally i didnt have to convince the few arrogant doctors (like I said not all) that I really was sick. No more having to bust my balls proving something that was so obvious! I was never scared because I knew all along what was going on. The scary part was thinking Im never going to get a diagnosis, which means Im never going to get treated, which means Im going to die of this disease all because a few doctors werent open minded to the fact that a person can still have Lupus with and ANA Negative Diagnosis. I dont understand why people have to suffer so bad and potentially cause irreversable damage while waiting for a diagnosis that is constantly "poo-pood" by some physicians. The doctors that did listen to me and take me seriously, and fight for me, I am forever grateful to. Without their help who knows where I would be today.

Hope this helps you! :)

Hopefully you will stumble upon diagnosed SLE patients in your hospital practice who will be able to help you first hand. The thing I am most wary about after 30 years of experience is doctors who cant make connections between symptoms and suffer from tunnel vision. SLE is a rare and complicated illness that is still badly understood. I have spent many months in hospital and have been able to help young, interested medical students and nurses who really wanted more information about SLE. If that has helped one person gain enough insight to help a Lupus sufferer the I will feel the time I gave them was well worth the effort. Why not try to track down in-patients and ask them to share their experiences with you. Nothing first hand accounts.

Hi there everyone,

I have recently been diagnosed with lupus although I am not convinced!

I was a gym goer and enjoy running but now hardly go to train as the after effects make me so ill!

Wondered if I could get advice about training and diet also anything that can reduce the effects of joint pain after training and help recover quicker?

Cheers dev

Hi al, Im a bit late to reply to this but my specialist nurse is great. I can ring when I am in a flare up and she either sees me herself and then if needs to checks with my rheumatologist if I need to change meds. Recently I also had to ring for another flare up....although they were full with appointments already...I got seen within 14 days....and got two steroid general and one in my shoulder. I have to say my specialist nurse at the Freeman is very knowledgeable and does get me in quickly if needed.

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