I was dx'ed about a year ago with a non-specified autoimmune disease due to positive ANA, joint pain, and fatigue. My RD suspected lupus because of the ANA but until now I did not have any skin involvement.
A few weeks ago, I got a rash on the underside of both forearms. It's not very noticeable, but very itchy, and the more I scratch, the worse it gets, becoming kind of puffy. I noticed it returned over the weekend after I'd been in the sun (I'm in FL) and today, I was in the sun with a short-sleeve shirt and long shorts, and now it's on my forearms and my shins.
I've done some research online about lupus rash, and all I can find is a "discoid" version, which is nothing like mine. At the same time, my RD told me to be on the lookout for any kind of rash at all. I've also been rather tired and have had stomach problems all week, so I think I may be having a flare. My holiday stress begins early, ha.
Anyone else have a rash like I've described, or know if lupus is generally only associated with discoid rash? Just FYI, I tested negative for scleroderma antibodies, but positive for ANA with a homogenous pattern, and positive anti-SS-A Ro, indicating Sjogren's. I take 400 mg Plaquenil daily.
Marilyn, hi. There *definitely* are lupus rashes other than "discoid". SCLE (subacute cutaneous lupus erythematosus) encompasses two lupus rashes *strongly associated with anti-Ro antibodies*. There are two forms of SCLE that look quite different to the naked eye, as follows:
1. Annular. It looks like papules in its immature form; in mature form, the papules expand into targetlike circles with clear centers.
2. Papulosquamous or psoriasiform. It looks somewhat like psoriasis but isn't.
Unlike discoid rashes, SCLE rashes don't tend to scar or depigment. And SCLE rashes *generally* don't itch. (I guess that means that "sometimes" maybe they do...?)
Are you on GENERIC Plaquenil = hydroxychloroquine? I've read that some patients apparently develop rashes from the drug itself, and more often on the generic, but also sometimes on the brand-name. Then there's always the chance that something else entirely unrelated caused your itchy rash: proximity to a plant, a new laundry detergent or softener, etc. So I think you should simply call your dr. to discuss!
I hope this helps some. FYI, I was Dx'ed with SCLE years ago. I had the annular form of rash for 8+ years (duh!)---and many other problems--- before I fled my clueless suburban doctors & went to a teaching hospital rheumatologist. I think the SCLE/Ro variant of lupus is fairly rare. Actually, many books & articles don't cite it either. One author who DOES cover it is Dr. Daniel J. Wallace. His hardcover is in most libraries & large bookstores. Look for his 3rd edition.
Anyway, wishing you GOOD LUCK! Let us know how you're doing, OK? Sincerely, Vee P.S. Most people with anti-Ro lupus are VERY sun sensitive. Do you observe strict sun precuations?
Last edited by VeeJ; 11-13-2008 at 03:24 PM.
Reason: added P.S.
Marilyn, here are a couple of other things I just remembered my big-city doctors telling me about lupus rashes:
The two SCLE rashes were first described & given their own names only in the late 1970's, by a Dr. Sontheimer. (I've always suspected this is why my local dermies & rheumies had never heard of them---just too OLD to have studied them in med school? )
Lupus rashes can "cross subsets". For example, someone who has previously had SCLE rashes is also "eligible" for discoid &/or malar rashes. I'm a good example: I had many years of SCLE nonscarring rashes, but I eventually got one "discoid", on my face, naturally... So having more than one kind of lupus rash is possible. But people with lupus are more likely than the general population to get *non-lupus* skin problems, too; or they can react to their meds.
People with SCLE rashes can be positive or negative for ANA. I was told about 70% are positive. But about 30% remain negative, because, it's believed, that in some people, anti-Ro can "mask" the ANA findings.
FYI, in my own travels, I met only ONE woman in person with SCLE rashes. She was positive for ANA, anti-Ro, and for antiphospholipid as well. In contrast, I remained NEGATIVE for ANA, which confused & prolonged my diagnosis.
The most foolproof way to Dx a rash as a LUPUS rash is deep-punch biopsy. In addition to the standard microscopic findings, a second step, immunofluorescent stain tests, are the gold standard. Why? Because these tests light up in a very unique way if a rash is truly a LUPUS rash.
Just give a yell if anything rings bells, or doesn't make enough sense to you, OK? Best wishes, Vee
P.S. Like you mentioned, I also had GI problems, severe, for 20+ years (aargh!), as did the one other woman I met with SCLE rashes. Both of us had chronic cystitis, frequent UTI's, and occasional urinary stones. Both of us had our worst pain along our shins, arms & shoulder joints. We both had migraines. Both of us were B-12/Folate anemic. Both of us developed our first big rashes in our late 30's, years after the other problems started. Ha!---it was like meeting my twin!
Last edited by VeeJ; 11-14-2008 at 06:00 AM.
Reason: added P.S.
When I was like 19 or 20 when I got my first (what I know now to be) flare, I was out in the sun and developed a rash across my cheeks and nose as well as on the inside of my forearms. The rash in both places appeared the same: it was red, raised, and sort of plaquey, but they did not itch. I had thought I got sudden skin cancer or something so I borrowed some money and went to a dermatologist. The rashes on the inside of my forearms were narrow, but ran almost the lenght from my wrist to my elbow; The Derm actually spent a lot of time with me and asked me all sorts of questions about other symptoms. He ended up thinking I might have lupus. I did have a few blood tests (couldnt afford a skin biopsy) and had a high ana titer, so he recommended that I see a rheumatologist. But back then, I really couldnt' afford it, so he prescribed me some kind of steroid cream and the rashes eventually went away. I never did see a Rheum until I was in my early to mid 30's.
VeeJay, thank you so much for all of the information. (sorry about the late reply, the day after posting this I came down with the most dreadful cold ever, finally feeling better).
I know that my tests have always been negative for the Scleroderma antibodies, if that means anything. In fact, everything is normal except for ANA and anti-SS-A.
I've avoided the sun all week and have not had any signs of a rash, so I've pretty much concluded that it "is" the sun causing it. I think the reason I don't get it on my face is that I wear makeup with a 15 SPF at least, but I do remember getting a blister about an inch under my eye over the summer when I went out one day unprotected.
Baybreeze, the rash you described on your forearms sounds EXACTLY like mine. It's long and narrow, from the elbow to the wrist, and I got the same thing on my shins where my legs were exposed.
Thanks for the feedback guys, it truly helps to talk to others who can relate!
Marilyn, I hope your cold is getting better & glad you posted more.
Do you wear hats? If you don't already, you probably should. Look for large brim & tight weave. You really don't want to get "discoid" lesions on your scalp, as they can cause permanent hair loss. My rheumie fought back laughter when I came in wearing a visor. Why so STUPID, you might ask? Well, no one had WARNED me I was also "eligible" for discoid lesions.
Have you & your doctor discussed trying to narrow down your Dx further? i.e., whether you have lupus, Sjogren's, or both? In that hardcover I mentioned earlier, Dr. Wallace discusses the multiple tests available for Sjogren's---including easy ones (Schirmer's test or Rose Bengal corneal staining), and one "ouchy" one (lip biopsy).
Because possible complications vary between Sjogren's & lupus, your knowing which condition you have could enable your doctor to monitor you more efficiently...? Just a thought---but obviously, I'm ONLY a patient...
Anyway, I'm glad you found us, too! Take good care, Vee
I asked my RD that very question at my last visit - is it possible it's Primary Sjogren's and that's all? He kind of shrugged and said it was 'possible' but both are generally treated with and respond well to Plaquenil, so I'd be on the same course of treatment either way. But of course for the reasons you mentioned, I would really like a more definitive answer.
The funny thing is, I would never have thought I had Sjogren's because I really have none of the typical symptoms, i.e. dry eyes or mouth. My eyes occasionally feel a little dry late in the evening but that's very common, especially for someone like me who works on a computer all day and wears contacts. It was at almost 600 on the positive side, so you would think I would have noticed something??
Anyway, I will definitely inquire about those tests... except for the lip biopsy, I'd never heard of them!