I have had small rashes which were NOT itchy but I have also had areas of extreme itchiness and there wasn't a bump insight. My right eye also gets red off and on...one time it stayed red for about three weeks...I'm not talking a little red either..it was so bad that I went to an eye doctor who said it was fine. It made me very self-conscious. I've had times where part of my tongue was very sore...no ulcers. I've also had the usual symptoms..joint pain,flu like feelings, etc. Anyone else experience the red eye and the itchiness WITHOUT a rash? I'm still in the diagnosing stage but I have had a positive ANA that went negative but at the same time had a positive Anti-SM and Anti-Ro.

Selaine, greetings. I'm only a patient, so please take what I write as such.

Is your doctor a rheumatologist, and one who sees a lot of lupus? I finally went to a teaching hospital. My local drs. weren't "up" on these matters, and that included the specialists.

Have you seen the ACR criteria? The list is in one of the three sticky posts (permanent info posts) at the top of the thread list. To be Dx'ed with systemic lupus, generally you must meet at least 4 of the 11, over time, not necessarily all at once. Imagine them being checked in permanent ink.

From your post, you've met one of the few that's considered very diagnostic of lupus: anti-Sm. I think this is a very important finding. In your shoes, I'd want really good explanations (why the wait?), retesting, or maybe even a different rheumie. (FYI, the only other thing as "diagnostic" is anti-ds-DNA.)

I think ANA can fluctuate. I read recently that it often stays elevated well after a flare has receded. Thus I don't think yours going negative is very meaningful. FYI, anti-Ro is seen in both lupus & Sjogren's syndrome.

Have you been keeping personal copies of your test results? Can't hurt, esp. if you need to change drs. quickly, see another specialist, etc.

Are you near a library? There are several excellcent hardcovers on lupus. Look for Dr. Daniel Wallace &/or Dr. Robert Lahita. Dr. Wallace is esp. good with his explanation on the ACR criteria & on blood tests.

Ooops, forgot itchiness. I get that, esp. lower legs & ankles, pronounced after hot showers. I was told it's mild *cutaneous* vasculitis, which inflames small blood vessels in the skin. In contrast, *internal* vasculitis can devastate internal organs.

There are others here who've tested positive for anti-Sm, so I hope they especially chime in. And I hope you post more soon. Meanwhile, keep trying & hang in there! With my best wishes, Vee

P.S. I was dx'ed with the SCLE variant of SLE, positive anti-Ro, multiple positives of immunofluorescent stain tests on skin biopsies, years of targetlike nonscarring rashes & decades of other things common in lupus, incl. anemia.