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!
Did your dermie do a skin biopsy? If so, did you see the *full* report? I guess I'm wondering if there there was anything in that report to distinguish your rash from lupus lesions, either "discoid" or "subacute cutaneous".
From what you see yourself, are your lesions only appearing on photo-exposed areas? Do you see any correlation between sun exposure & a new rash outbreak or worsening?
And---only if you feel like talking about it---what were your main reasons for tuning down the offer of Plaquenil?
I had a BRUTE of a time chasing down rashes that appeared about 4x yearly. When the rash was coming on, I felt horrible overall (flulike & shaky, fatigued, migraine, joint pain, muscle weakness, tingling sensations, urinary & GI irritability, etc.) Then I turned anemic & had really shocking shoulder & elbow pain. What do you notice about how you feel overall when the rash is on the rise? Does the rash have cycles (rise & ebb)?
I finally went to a teaching hospital rheumie & a dermatopathologist to whom he also sent me. I was Dx'ed with the SCLE "subset" of lupus, put on Plaquenil, and told to avoid sun.
The main things I learned, after 8+ years of rashes & many drs., were
(1) The "subsets" of lupus fit into the "4 of 11" criteria, but you don't have to meet 4. If you do meet 4, you have SLE or possibly SCLE.
(2) You do NOT have to have a positive ANA to have lupus. Most in SLE do; about 2/3 in SCLE do; and only about 1/2 in DLE (if that) do.
(3) Rashes are SOOOOOOOOO tricky. The part of the lab report that counts the most is NOT that top sheet, in which the lab writes some vague thing to soothe the patient while the dr. is waiting for some really definitive symptom to crop up. It's the "H & R", the detailed attachment the patient never sees, with the histiological findings, what tests were done (such as immunological), microscopic findings, etc. I was asked to have my old labs send these detailed findings directly to the dermatopathologist. Quelle suprise [sarcasm], I'd had cell changes strongly suggestive of lupus from the get-go.
(4) Even cell changes suggestive of lupus on a rash biopsy won't tell what kind of lupus (DLE vs. SCLE vs. SLE), so I was told. It's the look of the rash PLUS other clinical findings and test results that convey the full picture.
(5) Steroid ointments did nothing for my rashes. The SCLE annular (circular) are pretty resistant to ointments, the d/p told me. I needed the systemic help that Plaquenil can provide.
(6) Lupus rashes sometimes cross "subsets". For example, someone with SLE can get an SCLE rash, or even a discoid rash---and so on...
(7) I was Dx'ed with SCLE, Ro-positive but ANA-negative. I had the annular (circular) form of the rash, but there's also a papulosquamous form (looks like psoriasis but isn't). SCLE tends NOT to scar or depigment. Does YOUR rash?
For what this may be worth to you... I'm certainly no dr, obviously, but with what I've learned, boy would I do things differently if I had it all to do over again. Anyway, GOOD LUCK, diinin! Please keep trying! Sincerely, Vee
Hi Vee. I remember you from a couple years ago when I came on here the first time, when my body blew up on me. I remember your long struggle with doctors, too.
My dermie wanted to put me on Plaquenil for 6 months, way back in the beginning. We were trying to figure out whether I had SLE or not, and I was afraid it would mask the symptoms.
Since then, I've become more hesitant to use it (and it took me awhile to figure this out) because I was afraid that I did have SLE, and it wouldn't work. I know it doesn't work for everybody, and didn't want to find out it wouldn't work for me, and have nothing but steroids left in my arsenal. Stupid, I know. I also don't like taking meds if I don't absolutely have to, but all the stuff I'm using on my head is getting pretty time consuming. It might just be easier to pop a pill.
I did have a biopsy of the scalp. I read a report--not sure which one it was, but just remember it saying that it was LPP and that it wasn't lupus. But my rheumy said that LPP is often associated with SLE, and given my other symptoms and an ANA of >1:640, it became another strike against me. My CBC is still good.
I rarely go out in the sun, have avoided it for many years, long before all this came up. I almost think it's worse in the winter! The LPP seems to be here all the time, and VERY steroid dependent. I ran out one weekend, and it took me about 2 months to recover. I need to pay attention to how it relates to my other symptoms, like joint pain, but all of that has been pretty low key even while my scalp has been bonkers. I wonder if the steroids that are absorbed are enough to control everything else, but not the scalp? I have no clue. This is a rare condition and there's so little info out there.
I have SLE and had a horrible time with lichen planus for several years. It was on the top of my hands and half way up my forearms. I started taking plaquenil during this time for my lupus but it did not clear up the lichen. These spots were biopsied. I tried many prescription ointments that did not work and then my dermatologist prescribed Clobetasol which helped me a great deal. It seemed to get it under control and then I started taking 30 mg. of prednisone for my SLE and that finished up getting rid of it. It did a LONG time for the skin darkening to go away after the rash was gone. I am so happy to have it gone. It was miserable.
I pray that you will get your under control. Good luck. B
Looks like Clobetasol is another topical steroid. My dermie said that when these quit working, we can switch to different ones. This is a pain. (Or should I say, an ITCH?)
I was reading that the normal treatment for LPP is topical steroids for 6 weeks! I've been doing that for almost 1.5 years, and it's not getting better. The best I've been able to do is barely stave off the worst of itching and inflammation, but it's always there. I don't think we have it controlled well at all, and it just seems to be getting worse. I'm not even sure that what is travelling down my chest and back is the same thing, but either way, I look like I've got bugs!