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Maryk, hi. Sorry for your problems, not fun!

Have you seen the sticky posts (permanent info posts) above the user threads? There's one on skin problems in lupus: some are lupus-specific, others aren't. I'm curious what your face/neck/ear problems look & feel like. Do they itch, scar or depigment? Get worse or better after sun? (Etc.)

There are also stickies on how lupus is diagnosed, etc.

Back to skin... Discoid lupus lesions tend to scar &/or depigment. People who *present* with discoids only very rarely progress to full-blown systemic lupus. These patients are sero-negative, meaning don't have circulating autoantibodies in blood labs. This subset is called cutaneous-only or skin-only, but I think pain and fatigue are possible. While it's mild (as lupus goes), this subset can be cosmetically disfiguring.

In contrast, people with systemic lupus typically have circulating autoantibodies. Problem here is that antibodies can rise and fall as flares come & go, so trapping them on labs can take awhile.

Re: sero-negative RA, did your dr. discuss its characteristics? Did he do X-rays to look for erosive "mouse bites" that can be seen in RA?

I think ESR is a very general marker & can elevate simply due to, say, infection.

Maybe the moral here is a diagnosis can't always be made "for sure" from a single set of labs, or after seeing one rheumatologist and/or dermatologist. If I were you, I'd want my skin rash reviewed for at least three reasons: to double-check the Dx of sero-negative arthritis, to make sure the best meds are being prescribed (there may be add'l meds available if your lesions are really lupus), and to know if UV (sun/tanning parlors) must be avoided.

But even people with an AI can get all sorts of skin problems. Say yours itches/weeps and looks brown & crusty: I'd wonder about seborrhea. (A woman I know with lupus used to get it so badly on her ears and face that she needed IV steroids for weeks to clear it up.)

Sometime we have to try again. I saw 8 (!) dermatologists before going to a teaching hospital where 2 doctors zero'ed in fast. A thought: if there are lupus support groups in your area, perhaps someone there could give you names of dermatologists. My theory would be if a doctor knows lupus rashes, he/she is probably pretty good & worth a try.

I'm not saying this is lupus or that it isn't sero-negative RA, btw---I couldn't know. But finding a better dermatologist would be one of my goals. Anyway, I hope something above helps you with your thinking & that you post again soon. Hang in there! Warm wishes, Vee

P.S. Plaquenil helped my skin rash, fatigue, pain, migraines, anemia, etc. But I also must avoid sun, and wear sunblock & protective clothing. Plaquenil can take 3-6 months to reach its full effect, but partial relief can certainly be felt sooner than that.





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