VeeJ

Dear GracieGirl,

I am SOOOOOOO curious about the rash on your back. I have a subset of lupus = SCLE. It's MAIN ("characteristic") rash is different than BOTH "discoid" and "malar". The rash can be anywhere but typically favors the upper torso (upper back, upper chest, and upper arms). The rash can look like a small raised disc in early stages, then later turn into big rings with clear-ish centers. OR, it may be in a different form, kind of a blanket pattern.

In either form, it is typically nonscarring and non-depigmenting, UNLIKE "discoid" which tends to do both.

And here's the kicker: in SCLE, the odds of positive ANA may be 60-40, or 70-30, or something along those lines. In other words, a negative ANA is BY NO MEANS a bar to having this Dx. "Ro" antibodies are pretty common in this subset and may, some doctors think, actually "mask" positive ANA findings. (What a joke that result would be, huh???! A lupus that can trick even rheumies and dermies who know SLE & Discoid...)

Other symptoms: these can include the whole SLE range, but the very worst manifestations are NOT as common in SCLE (meaning CNS involvement and kidney involvement). Many cases are actually fairly mild. Since the possibilities remain, though, if you have SCLE you SHOULD be treated and monitored.

It was your comment about rash on the back that caught my eye, though. If you go to [url]www.emedicine.com/DERM[/url], then go to article 248, you'll see a whole raft of info about this subset. Also color pictures of the rash. I'm REALLY curious what you think after you read this article...

At time of Dx, my old medical history included encephalitis, pneumonia, frequent infections (sinus, UTI's), aberrant periods, periodic problems, migraines, "shin splints" (prob. really flat-out connective tissue problems), kidney stones, episodic monstrous fatigue, dizziness, erratic heartbeat, irritable bowel, irritable bladder, abnormal sed rate, and sciatica.

In the decade prior to Dx, add rashes; loads of lower back stiffness and pain; anemia; insomnia; and fatigue much more pronounced.

It took me 3 GP's, 3 rheumies, 5 dermies, and loads of tests to get any clues, let alone answers. No local doctors & specialists seem to recognize that darned rash, which was really prominent and came 4X yearly, minimally. The Manhattan rheumie and dermatopathologist each took one brief look & nodded. That's what a difference the right doctors can make. (Of course they did additional bloodwork and skin biopsies.)

I take Plaquenil (no ill side effects) and am very careful about sun protection. I have periods of blah's, but generally have managed much better in the last 4 years of treatment. I'm being watched also for APS and vasculitis.

In your shoes, I'd also hope for more clarity. Did he/she have a dermie do a biopsy that they didn't share with you?

Anyway, I send you my best wishes & hopes that you can get your doctor to talk turkey, as they say, with you. Hang in there & take good care.

Sincerely, Vee