Tannie, what does your rash look like & feel like? Where does it appear? Does it itch? Was the Dx made by a dermatologist? Did he do a skin biopsy with immunofluorescent stain tests, or did he just *look* at it and decide? What med were you given?
I also learned that many doctors have a limited understanding of lupus. I saw at least six dermatologists for my recurrent rashes & was told a wide variety of names. (Was CALLED some names, too!
) My dermies didn't even perform the right tests (the stain tests) that would have been the most revealing. Apparently they'd never seen the type of lupus rash I had (called SCLE). I concluded later that they knew only the two best-known lupus rashes = malar & discoid. Problem is, there are at least a dozen more, not as common, but just as real.
So, seeing a rheumie is one path, and seeing a dermie who really knows his/her stuff is another. And you should READ: it helps you ask better questions. Start with the "stickies" at top of the thread list. The one called "Resources" suggests library books (Dr. Wallace's REALLY helped me).
I agree, from what I've read, that ANA isn't the be-all & end-all. For starters, it can fluctuate. Plus, people with more limited lupus (for example, "discoid", sometimes called "skin-only") have negative ANA. And there's even a rare form of systemic lupus called "Ro-lupus", in which ANA stays negative even though a more specific autoantibody called "anti-Ro" is positive.
I have to cover up like crazy, whether people stare or not. I was positive for anti-Ro, and people with that tend to be very photosensitive.
I hope the above gives you more to think & act on. Of course, I'm only a patient, and you need real DOCTORS! Alas, competent drs. don't call us & offer their help. We have to keep trying until someone helps, so I hope you keep at it. Post more when you can, OK? Sending my best wishes, Vee