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Re: Skin Lupus?
Jan 1, 2007
Dear Northmackinaw, Your rashes sound miserable. But it's interesting to me that they ITCH, because I've read that lupus rashes rarely itch---BUT, you could be one of the exceptions, right? (But I'm only a patient & your drs. are your valid sources.)

OTHER SKIN POSSIBILITIES: People with lupus are more prone to OTHER itchy skin conditions, like garden-variety hives caused by meds (incl. some creams), food, beauty products, & the like. There's also a rare thing called "lupus urticaria", which I know nothing about except its name... Also, steroid creams can dry out your skin, and thin it, too. (Steroid creams made my skin flake & itch, but they did nothing to fade my lesions.)

A thought on the ANTIMALARIAL: If you are headed to one, maybe you could ask about generic Plaquenil, called "hydroxychloroquine". May cost less.

In answer to your question, Plaquenil is taken daily, not just during flares. Usual full dose is 200 mg twice a day (400 mg total). People who do well may eventually be reduced to a daily maintenance dose of 1 pill (200 mg).

UV EXPOSURE: UV light can trigger both rashes & overall flares, so sunbathing and tanning salons are usually no-no's. Have you noticed any correlation between your rashes & UV exposure? If so, in your shoes, I'd discuss with my dr(s) ASAP. So many people love being tan. But keep in mind that a lupus rash is, in & of itself, not the "real" problem. Instead, a rash is highly visible "red flag" that signals the presence of an underlying immune system dysfunction.

Seeing a RHEUMIE: I hope you can, given how widespread your rashes have become, the new facial rash, fatigue, fever-like chilly shakes, etc. Rheumies who know lupus well, in all its myriad forms, are probably more aggressive in ordering wide-ranging tests. For example: a negative ANA shouldn't halt the ordering of more specific autoantibody tests. The odds of ANA being positive are very high in SLE (95% or more). But in SCLE, the odds are only 70/30, or so. In DLE, they are lower yet, like 50/50. So what you want: someone who won't stop cold if your ANA is negative, because you could have one of the "subsets" where ANA isn't as likely to be positive. (I remained ANA-negative but eventually turned positive for anti-Ro.)

Also, rheumies know who the best dermies for lupus are, in case you need more skin biopsies, etc.

MORE READING: (1) In the search box above, you could look for more on lupus, SLE, SCLE, DLE, malar rashes, etc. (2) All "sticky posts" at the top of the Board. (3) In most libraries & bookstore, there are hardcovers by two rheumies. One is Dr. Daniel Wallace (easy to read, despite the complexities). The other is Dr. Robert Lahita, for whom you'll probably find multiple titles. To cut to the chase, try the Table of Contents &/or the Index at the back.

Obviously, you need the right drs. to carry you forward, but I hope your reading and posting will help you ask better questions. Plus, we're such good company, yes? :D Keep posting & letting us know how you're doing, OK? Bye & best wishes, from Vee
Re: Skin Lupus?
Jan 10, 2007
hiya :) im charlotte and i am 15 years old and from england. i am just writing to you because i have seen ur post that you made about just having been diagnosed with systemic lupus. When i was 7 years old i was diagnosed with exactly the same form of lupus as you. i get very bad rashes on certain parts of my body that are itchy , these are mostly triggered by sunlight. When in the sun i suggest you use total sunblock because it is the best protection even though you are still affected by the sun. It was a shock to the doctors to me having been diagnosed with sle because it usually affects woman of the age of 40 so to be 7 years old it was strange. How old are you (i dont mean to sound rude asking this) thankyou for your time charlotte :)





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