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This is a scalp condition that causes inflammation, itching, and permanent loss of hair follicles, which can mean baldness.

I've had it for about 2 years. I guess 85% of cases clear up within 18 months (I had to find that statistic off the web, as my dermie wouldn't tell me--she said, "This is not going to go away. You're going to have this all your life"). It also may be travelling down my chest and back now. I have just a few itchy red dots--they itch far more than you would expect from the number of dots I have.

I've been using two topical steroids to try and keep my scalp under control--Luxiq and Capex. Well, it's not really under control. There is still inflammation and itching, and it seems to be getting worse. However, on the good side, the steroids, being applied frequently (almost every day) to a wide surface area in a high circulation area, are keeping all kinds of things under control--possibly other related (SLE?) symptoms, and even my asthma! It's been wonderful. But I'm not sure it's a permanent solution, and I surely can't use it all over my body. (Outside the scalp, it's called lichen planus).

I'm just wondering if anyone else has this, and what they are doing about it. I could use Plaquenil, but refused it at one point. My rheumy told me that if we use it, and it works, that will give us a "lot more information" on a SLE diagnosis. (For insurance reasons, she doesn't diagnose until the patient has to go on Plaquenil anyway). It may not be a good thing, tho, to have steroids controlling things at this early stage.

Then I just found out that my rheumy's office isn't taking my insurance anymore. That just sickens me. She's really good, and I had a bad experience with the last rheumy, who tried to lie and imply that a negative anti-Sm meant no lupus, and then didn't inform me of a lab result that was out of whack. He said, "It's probably just a virus..." Still a virus, 2 years later???

I'm almost to where I'm going to stop being monitored altogether, because it's just not worth the trouble anymore. I can still go to the dermie, who REALLY doesn't know anything about lupus--she tried twice to tell me that I couldn't have lupus, b/c my ds-DNA is negative. I finally told her that that was only one of 11 criteria, and she hadn't even HEARD of the criteria!! Her intern she was training in agreed with me! Ugh.

Sorry so long. I tried to post on a derm board, but they wouldn't send me my login code!





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