Hi all, I am back again. Today I was sitting in the sun (nice warm day), had pants on. When I got home, I noticed my ENTIRE right thigh had a crazy red rash all over it like red circles (the size of a quarter). Not on the other thigh though. After being inside some, it went away.
Still thinking all of my odd sx may be AI. I took a pic to show to my dr..
I'm new to the message board and was just wondering how your skin is now.
I experienced the same circles you describe covering both thighs, buttocks, arms and chest at the end of 2007 and after constant visits to the dr with no diagnosis I requested a referral to see a private dr.
Well, I have had it only a couple times since I first noticed it last weekend. It seems to go away quite quick. My rheum said it is either a clotting issue or is associated to lupus.
What other symptoms do you have?
I have had mystery things going on for 9 months w out a dx as of yet...quick stabbing pains, burning nerve pains, muscle twitching all over, EXTREME joint cracking, pancreas inflammation (recent) etc etc...
Hi. Are your circles hollow in middle, like little bullseyes? That describes the "middle look" of the lupus rashes I had 3-4 times yearly for many years.
Earliest look was red raised bumps, like big mosquito bites but not itchy. Then at year 3 or so, the tiny circles. For the last 4 years, I had the fully mature form: same little circles appeared but then quickly expanded to size of palm of my hand, then expanded further & lost perfect circularity. The final version lasted a month or more before fading, but didn't itch, scar, or depigment.
My rashes were almost all on upper arms/torso. A few times I got just the immature versions (red bumps & tiny circles) on upper thighs.
After MANY local dermies & other specialists (gastroenterologists, urologists, etc.), I saw a big-city teaching hospital rheumie & was also biopsied one last time by a dermatopathologist. Rash Dx: SCLE = subacute cutaneous lupus erythematosus, the annular (ringlike) form. (FYI, there's a 2nd form of SCLE rash called psoriasiform, that looks somewhat like psoriasis but isn't.)
By that time, I met 4+ of the 11 lupus diagnostic criteria. Overall Dx: SLE, but subacute (no major organ involvement). Was positive for anti-Ro, but stayed ANA-negative, which happens in maybe 30% of people with *only* SCLE-type rashes, I was told. Also was negative for antiphospholiid syndrome.
Plaquenil has helped a lot, but I have to avoid sun, wear block & hats, etc. Because people with SCLE rashes are eligible for the same range of problems seen in "classic" SLE, I'm monitored regularly: bloodwork, urinalysis, etc. Both drs. said people with Sjogren's syndrome also can get these SCLE rashes. Both warned I was also "eligible" for discoid (scarring) lesions (did get one my face) and for the malar butterfly (never got one of those).
Dr. Daniel Wallace describes both SCLE rashes in his lupus hardcover, which is in most libraries & bookstores. I hope this helps. Give a yell if you want to ask anything, OK? Good luck! With best wishes, Vee
Hi, again. Now I know what you mean! Full name is "livedo reticularis". Looks like a bizarre reddish fishnet has taken up residence under your skin surface! (When I still did sun, I had it often, too. Startling...) I think it's a disruption of blood flow in tiny blood vessels, not really a "rash". I think it hardly ever needs treatment---and that *only* if it progresses to a form of vasculitis. You could ask your rheumie to describe what it looks & feels like if it's become dangerous. Take care! Bye, Vee
Hi. Try your library &/or bookstore for the standard lupus hardcovers written for patients & you'll probably find more info on livedo reticularis. I *think* it can affect people WITHOUT lupus &/or antiphospholipid syndrome, as well as people WITH either/both.
Did your rheumie also include tests for anticardiolipin antibody & lupus anticoagulant? FYI, that 2nd name is a misnomer. Both tests really have to do with antiphospholipid syndrome (APS). There's a "sticky post" (permanent info post) at the top of the thread list on APS... have you seen it?
I hope things become better soon for you. Stay in touch with all us, OK? Bye, V.
Organichick, hi. In answer, I've really done very well w/Plaquenil. I've taken it for 9 yrs: started at 400 mg daily, then reduced about 16 months later to a maintenance dose = 200 mg. My chronic GI & urinary problems disappeared almost immediatly, as did horrific hedaches. B-12 & Folate levels returned to decent ranges. Tingly sensations stopped, too. Fatigue not nearly as bad or as frequent.
Hair: mine was in bad shape when I started Plaquenil: no bald spots, but breakage along front/sides of hairline, and on crown. Within first year, hair improved a lot, but I still get minor breakage occasionally.
Pain levels: have less day-to-day but still get some nasty bouts. I'm actually more barometrically reactive now than I was before. In addition to Plaquenil, I take OTC ibuprofen daily.
Bone density: that's improved, too. (I also take Fosamax.)
Sun: I learned quickly that even with block & hat, I simply can't "do" sun. Like you, I'm in the anti-Ro group. Some doctor/authors believe that those prone to SCLE-type rashes are apt to be extremely photosensitive.
Due to concern about retinal buildup (very rare), I have a field vision twice yearly. (Rheumie insists.) My vision has remained fine.
About your itchy, scabby, depigmenting rashes: Did your rheumie think these were the "psoriasifrom" type of SCLE lesions? (I had the annular = targetlike form of SCLE rash.) Or discoid lesions? Or even maybe psoriasis? (People with lupus can also get psoriasis, maybe even get it more often than normal people.) Or maybe even solar urticaria = sun-induced hives?
I hope your rheumie & you can get everything under control soon. Let us know how you're making out. Sending my best wishes, Vee (Watch that sun! Don't mean to nag, but I'm sure avoidance has been one big factor in my stability.)