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AFC, I don't really understand that "alternative criteria" (in sticky post) about sulfanomide reactions in people who later may develop lupus, but I assume it means something far worse than skin eruptions. I had back-to-back pneumonia & encephalitis at age 4, landing in a children's hospital where drs. finally took me off the penicillin-type drugs I'd been on for months... Sadly that's too long ago to know WHAT drugs (were they sulfanomides?), and whether they caused the 106+ fever & convulsions...

This may sound stupid, but how were your many kidney infections diagnosed? I had frequent UTI's for years, but then started experiencing urgency, frequency, and burning pain WITHOUT infection, as verified by urinalysis. And it was all happening in concert with at least some of my other recurrent middle-age problems (pain, fatigue, rashes, GI misery, migraines, etc.). I saw multiple urologists. The last one considered testing me for Interstitial Cystitis (IC), but decided against (it's a knock-out test). Have all your latest bouts been in the absence of tested infection? And along with other problems? (Conclusion for me was that my misery was lupus-related, not IC. Since taking Plaquenil, I've had virtually no bouts. For all I know, other inflammatory conditions besides lupus & IC might cause urinary misery.)

Yep, travel was misery for me, and I had to do a lot for business. My memories of many U.S. cities: dragging myself, suitcase & briefcase thru airports while biting back tears. Likewise, as more chronic symptoms appeared, sleep became badly disrupted.

Has a dermatologist seen your "rosacea" since your positive ANA? I've read varying reports whether rosacea can be distinguised from malar rash solely on appearance. The more "medical" articles tend to say NOT, that skin biopsy is the surefire way. I've seen pics of malar rashes that affected eyelids.

I think many people are "works in progress" for a long, long time. On the one hand, it's great not to have acute life-threatening problems; on the other, being in limbo stinks, so wishing you clarity soon! Always, Vee





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