Re: Undiagnosed. Between Rhem. appts, need to vent.
Nikki, hi & welcome. Gee, I think this board is perfect for you to post on... but sorry that you're having the kind of problems that bring people here.
Have you seen the "sticky posts" (permanent info posts) located above the user threads? They have basic info & are a good place to start. You'll find lupus diagnostic criteria, symptoms, skin problems seen in lupus, etc.
I want to ask more about your arm rashes, if that's OK. The two lupus rashes that most doctors tend to know right off the bat are (1) discoid, which tend to scar and/or depigment, and favor the face, ears, etc.; and (2) the classic malar butterfly, across the ridge of the nose. Who knew---I sure didn't---that there are perhaps a dozen more lupus-specific rashes beyond those two?!
Like you, I had arm rashes, also lesions on my back. Lupus wasn't on my radar either, despite recurrent problems over many years that I now realize were probably early flags for developing lupus later on. (There's a "sticky" with "alternative criteria" that lists these early flags. I matched on most.)
My rashes didn't scar or depigment, or itch or hurt. For the first few years, they were only raised red papules---like juicy mosquito bites that didn't itch---that appeared, then faded. Then those same papules would recur but now EXPAND into perfect red circles with clear centers, then further expand into larger non-circular shapes. Then fade. A few months later, the whole cycle would start again. My rash was finally dx'ed as subacute cutaneous lupus erythematosus, the annular (targetlike) form. To confirm, I had deep-punch biopsies with immunofluorescent stain tests done by a dermatopathologist.
And there's a second SCLE rash that looks totally different. It's called SCLE psoriasiform (or papulosquamous), and it looks a lot like psoriasis (but isn't). Like the SCLE annular, it favors arms/back but can go more widespread.
People with the SCLE rashes can meet fewer than 4, 4, or more than 4 of the ACR criteria for systemic lupus. Like many with the SCLE rashes, I eventually tested positive for *anti-Ro*, the same autoantibody seen in Sjogren's syndrome. But this took awhile: my initial labs came back revealing nothing.
(Interesting that you mention dry eyes. That's a hallmark of Sjogren's, the other AI in which anti-Ro is seen.)
Weirdly, of the people who get the SCLE rashes, approx. 2/3 are ANA-positive BUT the other 1/3 remain ANA-negative---meaning the 1/3 are EXCEPTIONS to the "general rule" that ANA is positive in systemic lupus. This can confound doctors who aren't familiar with the SCLE "subset".
My rashes were extremely photosensitive, which is typical of the SCLE rashes. For me, UV brought on all my other symptoms, too, not just rashes. Plaquenil and sun avoidance have helped me a lot.
I was often B-12/Folate anemic. This cleared once I started Plaquenil. Now sun avoidance depletes my Vitamin D.
Hope something above rings bells, not that I wish any kind of lupus rash or lupus-like symptom on anyone, and I hope you post again soon. Sending my best wishes to you, sincerely, Vee