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Lupus or not?
Feb 21, 2005
Hi folks, new here and wondering what to do. Hope y'all can give some advice. I have been suffering with skin allergies for a long time now. Started off becoming allergic to the sunscreens I used till gradually I couldn't use any - cause a burning itchy rash. Developed Poly Morphic Light Erruption. Have generally photosensitive skin. Developed eczema and psoriasis (cured by homeopathic doc), always have hives. They drive me mad - always itching somewhere. Little red itchy blotches just pop up out of nowhere, they're hot and itchy and look like nettle rash. I have demographia so that if I scratch my skin at all, it comes up in something that looks like nettle rash again. I can write my name on my skin - it's my party trick! Recently my eyes have been getting very itchy, always puffy, itchy eyelids. Woke up recently looking hideous - very puffy eyes, red inflamed itchy rash on eyelids and in two bright red stripes from the outer corner of my eyes, leading down round my eyes, across my cheeks. Doc said it was allergic conjunctivitis and prescribed an antihistamine - it helped but as soon as I stopped taking it, the symptoms gradually came back. I just feel like my skin is attacking me. I also have digestive upset, premenstrual problems and, incidentally, this might sound crazy, but all the skin symptoms seem much worse when my period's coming? Does anyone think it's possible that I have the form of lupus that affects the skin? I'm struggling to get answers from anyone, no-one seems to want to bother to find out why I'm always getting hives etc. How do you go about suggesting to your Dr. that you might have something, rather than letting him diagnose? My skin is driving me crazy and I'm desperate for a solution! Oh yeah, get thrush every single f*&^%$g month! It was absolute agony last month! Oh, and I get a sore tongue with mouth ulcers and mouth ulcers inside my cheeks too. It seems that Docs simply don't understand how intensely draining constant rashes and skin problems actually are. I can't even try on clothes in a shop without getting the dermographia, it's hard to look pretty when you're constantly scratching somewhere and endless bouts of thrush don't do much for your love life! HELP ME! Somebody!
Re: Lupus or not?
Feb 21, 2005
Dear fayefvt,

Greetings. I just saw your post. I can sympathize, having had years of various itchy and non-itchy skin problems before getting a rash finally determined, after years of doctoring, to be lupus-specific. Call me cynical :D but, in my experience, skin problems are very hard to track down.

One thought on the reaction you describe to a sunscreen---was it the sunscreen that did it, or was it the SUN? I went for years slowly becoming more photosensitive but not realizing it. Even when I first got a lupus-specific rash, I didn't associate it with sun as it bloomed fully only months later, in January, months after summer sun exposure.

I was told much later that it can take a very long time for sufficient immune "junk" to build up between the dermal & epidermal layers to form a visible rash. The "junk" is there, but you don't necessarily suspect that until a rash erupts. Yes, I'd started to get headaches and the "shakes" after sun, but those didn't "register", alas. Only in the final year prior to Dx did I see a rash form really quickly.

Anyway, about diagnosing rashes: Have you had deep punch biopsies done? And by someone specializing in autoimmunes? As soon as I got my first big rash, I went to a dermie. Alas, I went to one who did "general" work and a lot of cosmetic procedures. While she had a huge rep, she wasn't the right dermie for me. She Dx'ed an allergic reaction & prescribed useless (and very expensive!) steroid creams.

Five or six biopsies later, I had enough other symptoms and had been told by a radiologist doing a kidney function test (!) that lupus was a candidate. I waited until the rash reappeared, then demanded the name of a teaching hospital rheumie. He did his thing, then sent me to a teaching hospital dermatopathologist ( = a dermie who does his own labwork). Bingo. He did bloodwork and another deep skin punch, on which he did a series of immunofluorescent tests.

Turns out I had (have!) SCLE, which is a "subset" of SLE in which *Ro* antibodies are found in about 70% of patients (the other 30% remaining sero-negative). No one in the suburbs recognized the rash as a lupus rash, because they were looking for full SYSTEMIC lupus, not for a subset like "subacute cutaneous LE" or "discoid LE".

I'm surely no doctor, but I've done enough web browsing to see pics of PMLE. I've read that it's hard to Dx and can be confused with other skin conditions. For example, in the SCLE subset, two types of rashes are seen. One is an annular, nondepigmenting and nonscarring rash that favors the torso & upper arms [I had that one]. But the OTHER is a psoriaform papulosquamous rash that can to the naked eye look like PMLE, among other things...

If you browse on "SCLE" and look for "straight medical" websites, perhaps you can find this type of info. (I'd post the actual links, but we are not permitted under Board rules...)

What tests have you had done? Do you see a sun correlation? And how do you feel overall---any other symptoms, like fatigue, arthritis, etc.? FYI, I had my rash for eight years before I got answers, by which point I felt pretty punk overall, so I can really understand that you want answers NOW.

Hope this helps some & that you keep posting. Meanwhile, best wishes to you, from Vee (who formerly looked like the Tatooed Lady of circus fame)
Re: Lupus or not?
Feb 21, 2005
Ok I have all if the worst skin stuff. I looked like a burn victim at points in my life, and once was debilitated for two weeks because of eczema. My derm loved me because he said I was an interesting case. :) My derm perscribed a tanning bed to help the rashes and when I did it all hell broke loose. I had a really awful (spare the details) rash over my whole body, except the skin covered by the bathing suit. So huh that should of been my first indication of a sun issue. The wonderful eye thing came after I moved to a sunny climate. I have really bad eczema not only on my eyelid but on the fold inside my eye. At times I find myself violently scratching my eyeball! I scratch my eyes all the time and am getting nervous now as to the damage I am doing. But I can't help it, they itch so damn bad. I tried several different eye drops, but to no avial. So now this is what I am doing and so far it is working. First I wear sun glasses--even at dusk and even in the rain. Then a really big hat when I have to be outside, and I cover my body. (The other day I walked in the sun in capri's with sandles, and I had a rash on the skin that was exposed! A rash in the outline of sandles-beautiful!

But the eye thing: So I have a lot of those eye covers from airplane trips. So each night I take one and put it on my eye, but I do that after I fold a peice of tissue over my eye. So it's a folded tissue with the airplane eye cover thing on top-holdig in the tissue. I find that the tiny bit of pressure from the tissue and eye thing on the eye, relieves the itching, and I don't scratch the eyes anymore in my sleep. I also sleep with socks on my hand so I won't scratch in my sleep. And my hair pulled back so it won't rub against my eyes or face causing me to get itchy. Sexy huh?!!!!

I use protopic cream for my face which is the cream from hell because it causes so much itching after putting it on, but I am nervous to use topical steroids on my face area, and protopic works after the itching subsides. I do use a strong topical steroid all over my body, but I mix it with Eucerin. So far this is working, and as my derm said "I love you people with eczema, you always seem to find what works for you!"

But now that I am being looked at for Lupus, my derm says parts of my rash can be SCLE or SLE. Keep track of what you got, and take pictures for your doc if they go away. A tip I learned the hard way. Good luck! Kathie

Anyways the itching can be the worst. Last night I had it so bad, I really toought I was going to go into shock from it. Suffice to say, got not sleep.
Re: Lupus or not?
Mar 2, 2005
Hi Guys,

Good to hear from you all - it's such a nice community, so good to speak to people who actually understand this! When I'm at work and I come out in a big dermographic rash I don't even bother to try to explain properly to people what it is because even when I do, they just look at me like I'm neurotic. They think I'm plain weird!!

As regards what I've had done since I talked last, nothing! I've been up to my eyeballs - I do post graduate research, teach twice a week and work 20 hours a week in a shop! I also have a genuine block on going to see Drs because I can't be bothered with them! I hate having to argue and demand to be treated - it's what they're there to do, I shouldn't have to demand things from them! But this is the nature of the beast...it's the NHS, they have 10 minutes per patient but ideally want you diagnosed and out of there with a prescription ASAP. I'm not convinced about my last diagnosis - it was apparently allergic conjunctivitis. My eyes were swollen, inside and outside of the eyes were itchy and in an inflamed rash, and underneath my eyes there was a rash that looked like the 'malar' rash (checked out the sticky posts etc!). Although I've taken the antihistamines and the eye drops, the problem hasn't completely gone away - it's just died down a bit. My eyelids flared a bit the other day and my eyes are often burning and watering. I'd guess I'm allergic to something (praying it's not my mascara as I love it!) but I don't know what. I suppose I'll just have to go and ask them to test my skin.

The thrush is ongoing - I try to keep it at bay with Nelson's Candida tablets but it's not solving the problem. As regards hydrocortisone and steroid creams - I gave up on those. They don't really do much for me and besides, the last time I had a massive, agonisingly itchy rash on my inner thigh and I rubbed a hydrocortisone cream into it, it just burned like mad. The pain of the burning after the cream was worse than the itching - and that's saying something!!!!!

I guess I have to bite the bullet and make that appointment. I need to find out why I always have hives, thrush, watery, sore eyes, and dermographia! I MUST DO IT! I MUST DO IT!! It will be my mantra! Do you know the thing about rashes though - I never have one when I go to the Dr to talk about one!!! They all mysteriously calm down making me look like a hypochondriac maniac!

Right, will make the appointment tomorrow. I will let you know how I get on but it usually takes months to get a referral to a dermatologist. If you don't hear from me again, you all have permission to track me down a make me deal with this! The more rashes I get, the more I simply incorporate them into my life and try to deal with them in my own way....avoidance tactics!





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