Hello everyone...

I'm new to this board, but have been reading for a couple of weeks now.

I have Primary Biliary Cirrhosis (autoimmune liver disease), Multiple Sclerosis and Sub-Acute Lupus Erythamatosus. Tested positive for 6 of the 11 ACR criteria for lupus. Most annoying is the rash. Thought to be a form of luekocytoclastic vasculitis, no biopsy done yet. Have had rash since about 1997. Fianlly diagnosed a month ago!!!! Taking 20mg of steriods daily to keep under control. Steriods also controlling MS. Haven't started MS meds yet. Have to wait to see MS specialist in Sept.

Anyway, thought I'd intorduce myself to the board.

Take care,
Joe

Welcome Joe!

Hi, Joe.

A big welcome to you. I had the SCLE rash also for many years. None of the many specialists I saw locally even recognized it, despite some pretty clear biopsies. 'Twas a bummer. :eek:

What's a "leukocytoplastic vasculitis" rash look like? Just curious---so you don't have to dignify it with a response, if you don't care to.

My rash: big red circles, upper torso, nonscarring and nondepigmenting. Looked like the Tatooed Lady from the circus. I scared people at the gym, when I still had the energy to go, that is.

I defied diagnosis by staying resulutely ANA-negative and anti-Ro negative. I understand this can be so in upwards of 30% or so of SCLE patients. My other symptoms drove me forward, though---the rash was ugly but almost a side issue.

I've been on Plaquenil for 4 years, still flare but not as badly. No rash at all since that time, though. I really am pretty careful with the sun.

Anyway---hope this finds you getting closer on your rash issues, whatever the root cause!

Take good care, from Vee

Joe,
I'm fairly new here too and have posted both here and the MS board. I just went to my Rheumy on Wed to find out about my test results. He'd done a full panel and was specifically looking for the Ribosomal P Antibody test to come out pos because I've been having some small neuro issues.

The test came up neg and now he is sending me to the lab for neuro path way or perhaps me said neuropathy tests on one of my arms and is referring me to a neurologist to be checked for MS. I was kidding in one of my posts that maybe I had both and here you post within a few days of me saying that.

I currently only have a few of the criteria for SLE although my Rheumy tells me we are treating me as if I do have SLE because its only a matter of time before one of the other tests come up pos. Even tho I have a long history of autoimmune things he's thinking it might be MS but I'm not sure if he thinks in addition to possible SLE or instead of SLE. Frankly I don't want either. :nono: I appreciate you posting because if I do have one or both it's reassuring to me that someone else does too.

Joe,

I forgot to say that there are some great dermatology sites on the Web that ordinary folks are allowed to access, after a simple & free registration process. You could use your broswer, if so inclined, to locate some of these.

Once there, you could do a search for "SCLE", vasculitis, etc.

Naturally, anything you see &/or print does not take the place of skin biopsies & a doctor's interpretation of the lab findings.

If I were totally honest, I'd admit that several of my then-doctors were not overly pleased when I found a medical article, complete with pictures, of a rash that looked & behaved a whole lot like the one I had---on paper, anyway. But the doctor who then counted most to me was bowled over & hooked me up with teaching hospital rheumatologist.

I was next sent to a dermatopathologist (= a dermie who does his own labwork, meaning has a dual speciality). This approach worked the best for me. My old labs had been basically ignored: the labs had done their thing correctly, only to have the local dermies translate the lab findings into incorrect Dx'es. In contrast, with a "d/p" specialist, there's no "middleman".

Turned out the rash was SCLE all along. Why it took so long makes more sense to me now. This rash is not nearly as frquently seen, I was told, as some of the other lupus rashes. And my bloodwork was not revealing any solid answers. The answers were ONLY in the skin biopsies.

By the way, MS was mentioned as a possibility for me, too. I had mild neuro-like things going on = tingling, trembling, weakness, big ugly headaches, clumsiness. Turned out these seemed to have to do more the the lupus &/or the anemia.

Whatever it is you learn during your upcoming Sept. neuro appt., etc., I'm glad you found us here. I wish I'd known such a group 10 years ago, to help me get questions together to pose to my doctors, prepare better for appts., and have some company during the prolonged diagnositic process.

With my best to you, Vee