LUPUS UK
20,888 members16,578 posts

Could this be Lupus?

Hello all, I am new here and hope someone can advise me. My daughter in law has suffered for about 10 years with a skin condition that comes and goes. She can suddenly get flare ups when her skin on a part of her body feels like it is on fire. Within minutes the skin is bright red and begins to break down leaving red raw open areas. She has never been given a proper diagnosis. She has to take herself to hospital where the wounds are dressed and that is about it. I have witnessed these sudden flare ups and they are shocking to see. She finally has a GP who is taking her seriously and is listening to her concerns, but is yet to come up with an answer. My daughter in law feels (and I agree) that it might be an autoimmune condition and it usually happens when she is under severe stress. I wonder if anyone here has had such awful skin problems?

14 Replies
oldestnewest

It does sound very autoimmune. There are so many autoimmune diseases and variants within each. Vasculitis, Lupus, Dermamyositis can all affect the skin very severely - to name but three of many.

Has she had a full antibody screen yet and been referred to a good dermatologist or, even better, a rheumatologist? I would say that this is the next first step her GP should refer her for. If they are good they won’t wait to try and figure it out themselves - they are just generalists and some of these autoimmune diseases are very rare.

3 likes
Reply

Thank you for your reply. I don't think she has had a full antibody screen, but I believe she may have seen a dermatologist some years ago. They were not helpful. We do have a Vasculitis and Lupus unit at our local hospital, so maybe she should see if her GP will refer her. Shame it has taken so long to be taken seriously.

3 likes
Reply

Yes it is such a shame but it happens over and over with these autoimmune diseases - been there myself. If her GP is any good they will agree to test her antibodies (advise her to ask for copies) and refer her to this Lupus and Vasculitis centre asap.

2 likes
Reply

She definitely should be seen by the vasculitis/lupus unit. I'm rather appalled that the hospital has never followed it up properly if she is there repeatedly. My experience of dermatology wasn't helpful either - the doctor I saw was only interested if it might be cancer.

How does the rash appear? Does an area itch/burn unbearably and then form blisters which don't heal after being broken?

3 likes
Reply

Yes, it burns unbearably and she has to hold it under a cold tap to stop it. It is very rapid indeed and it looks like the top layer of skin comes off leaving it very red and sore. Sometimes the patches are small, but sometimes it can cover large parts of her leg for example. It is very frightening for her.

Reply

As you see, Tiras has a similar problem. But it can happen in various illnesses - the one that sprang to mind for me was dermatitis herpetiformis, a form of coeliac disease which does always have gastric symptoms.

You need a doctor to take you seriously. So keep pushing.

1 like
Reply

I can sympathize, I know the feeling well. I get blisters that come up and start to grow. I mainly get them on my feet now, but in the beginning, I could get them on my body especially on tender skin areas. They would blister then turn to an open looking wound and then leave a scar? For me it turned out to be Lupus skin issues per rheumatologist and dermatologist.

It definitely needs to be checked and tested. I'm not saying it is caused from or by lupus, but it was for me?

Just remember

"LUPUS EFFECTS US ALL DIFFERENTLY, BUT YET THE SAME. THAT DOESN'T MAKE SENCE BUT, NEITHER DOES LUPUS"!

I will try and post some photos of my blisters and scars.

1 like
Reply

I have terrible problems with my skin flaring up with large blisters appearing and spreading quickly and I have a diagnosis of Behcets disese. Not sure what other symptoms you have but with this you usually suffer with ulcers as well. Hope she gets some help soon

Reply

Go to a R HEUMATOLOGIST ,ONE THAT IS WELL KNOWN ,SOME ONE LIKE A PROFESSOR AT A UNIVERSITY . I FINALLY DID AFTER BEING TREATED FOR ALL KINDS OF THINGS AND DRS AND MONEY I DIDNT NEED TO SPEND . U WANT GET A DIAGNOSIS TILL U DO ,NOT AN ACURATE ONE .

WISH U GOOD LUCK . PS MINE WASNT SKIN RELATED IN THAT WAY THO NOT EVEN CLOSE .JUST HAD THE BUTTERFLY RASH AND FLARE UP IN JOINTS WHEN IN SUNLIGHT .

Reply

I have outbreaks such as you mentioned and many others, when I over do it or life is very busy/stressful, very cold or very hot and also when I eat certain foods such as tomatoes, dairy and drink coffee to mention just a few. I have had tests that don't show Lupus, but the doctor stated that doesn't mean I don't have it. The answer seems to be for me to get to know my body and don't go over my limitations or I suffer. I have seen a dermatologist and many doctors and they don't seem to know what it is, but it is a lottery and it is finding the right specialist it seems which can be stressful, traumatic in itself with the travelling, sitting in hospitals and waiting rooms. I gave up in the end and do my best to manage it myself!

Sorry to sound disheartened, but I am thoroughly fed up with a useless medical system.

2 likes
Reply

I do and have for a long time...I was DX'd this past summer/fall....Biopsy of skin rash which lead to further testing.. Subcutans/discoid Lupus is my DX...I have had 2 opinions..one set of Drs didn't agree with the discoid....but really doesn't matter as teatment goes...My Best to your DIL xo

1 like
Reply

It really could be anything, my thought was an an allergic reaction especially as it comes on within minutes. But after 10 years it is shocking that no one has got to the bottom of it. And she really does need to be referred to a specialist and be properly tested with a biopsy. It is great that she has your support and she may wish to take you with her to appointments. It sounds like she will have to be persistent and if her local hospital/consultant can't help then I agree with puppy69 that a further referral should be made. Good luck

1 like
Reply

Thank you all for your helpful comments. I will let you know what happens.

1 like
Reply

Hi Lupin62,

Welcome to the LUPUS UK HealthUnlocked Community!

We offer a free information pack which contains factsheets, guides, a list of helplines and a list of LUPUS UK contacts who you can chat with over the telephone. To download or request this pack, click here: lupusuk.org.uk/request-info...

Skin involvement is common in lupus, with 60-70% of people with lupus reporting some skin problem. Rashes can be induced by sunlight as well as other factors which are discussed in our ‘Lupus and the Skin’ guide; lupusuk.org.uk/wp-content/u...

We published an article on our blog about coping with itchy rashes; the article contains helpful tips and information which you and your daughter in law can read here: lupusuk.org.uk/coping-with-... .

To read about the specific tests and criteria that are required in order to make a diagnosis of lupus, click here: lupusuk.org.uk/getting-diag...

It is important to bear in mind that lupus presents differently in everybody therefore, it is unlikely for two people to share the exact same experience. It is possible for people to experience periods of remission where their lupus is controlled and they feel relatively better; reducing the signs of their symptoms.

Periods of remission vary from person to person.

Wishing you and your daughter in law all the best.

Reply

You may also like...