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Re: SCLE questions
Oct 9, 2007
[QUOTE=VeeJ;3249443]Jenny, the subsets of lupus are hard to explain. I'll try, but FYI, there are hardcover lupus books in most libraries & bookstores that could help. Look for Dr. Daniel Wallace and/or Dr. Robert Lahita. Also, you could try the SEARCH BOX (upper left of this screen).

SLE (classic lupus) is described in the "sticky posts" at the top of the thread list. To be Dx'ed, a patient must meet any 4 of the 11 SLE criteria, not necessarily all at once. And even SLE ranges widely, from mild to major organ threatening (meaning life-threatening).

Then there's SCLE, which is thought to be an intermediate form, between SLE and DLE. Two rashes are considered characteristic. One is annular (targetlike); the other is psoriasiform (looks like psoriasis but isn't). SCLE lesions do NOT scar. How serious SCLE is: 50% of people with SCLE actually meet 4 or more of the SLE criteria, but generally not the worst ones (say, kidney & CNS). The full range of problems seen in SLE can occur in some SCLE patients, but most people remain on the mild side. Anti-Ro is the autoanibody seen in most SCLE patients.

Then there's DLE, discoid lupus, the subset in which people have "only" scarring &/or depigmenting rashes, with perhaps some arthritis. Discoid rashes DO scar &/or depigment. A *small* percent of people with discoid lesions do progress to SLE.

You can't tell what degree of lupus a person has *only* by the type of lupus rash. Instead, the totality of symptoms & criteria is what defines the subset you have.

Also, as one of my drs. said so clearly, "Rashes cross subsets." His example: someone with SCLE is also "eligible" for butterfly facial rashes (associated with SLE) & for discoid lesions (associated with DLE). And I actually proved his point, by getting one single "discoid" scarring lesion.

Plaquenil is actually NOT for major organ-threatening lupus. It's in the mildest class of lupus drugs, for people with milder problems, INCLUDING PHOTOSENSITIVE RASHES. In contrast, people who do have major organ involvement must take steroids &/or immunosuppressants.

I was also told it would never go away. The rashes will fade, obviously, but the tendency won't. I wear hats with brims in addition to using sunblock, because I don't want scarring (discoid) lesions on my head that could cause permanent hair loss. I cover arms & legs, and avoid midday sun.

Don't let your drs. rattle you! The main thing for you is that only your skin is acting up now, right? And that you're under a rheumie's care & will be monitored? That's the prudent approach for your dr. and you to take, and is considered the "gold standard" for care.

Just give a yell if anything catches your eye here, OK? Bye for now, and take good care, Vee[/QUOTE]

Thank you for taking the time to writing be back. You are helping me understand what I have and what I need to do to protect myself.

First off this Rheumi told me I would never get any answers to my questions from research online nor with books.This is a very rare form of Lupus I have and there has been very few studies done on this. But as the days go by and talking with others with this,and learning how to word my questions is helping answer several questions I have/or had..

Second off,he told me it WILL go away with time ,he feels its something I will "grow out" of..But my dermi is saying something completely different..

Third off,since all this started back in April I have noticed alot of changes in me. Such as....

1.stomach problems,constipation,diarrhea,nausea,loss of appetite (similar to IBS)
2. dizzy spells,vertigo spells ( been having vertigo since 2002)
3.headache and migraines. (since my teenage years) (I am 27 now)
4.mood swings
5.being really tired at times,can barely get out of bed (but thats not every day,comes and goes)
6.over all feeling like crap (is not like this all the time,it comes and goes as well).
7.when I get my period symptoms are at their all time worse.

My dermi does not seem to think its Lupus related,but it didnt start until after I found out I had this type of lupus..

I also had my thyroids removed last year,so my Rheumi seems to think this is thyroid related and not lupus related either.But I am sure I would have felt these things going on way before now..

As for the rashes I have/or had. The ones I had back in April,left behind what appears to be scars. I can see lil white or light pink marks where the rahes once were..(they remind me of burn scars).But my rheumi seems to think they will not scar forever and that they will go away with time as well..

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