Thread: Need Advice
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Old 04-19-2006, 04:30 AM   #4
VeeJ VeeJ is offline
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Re: Need Advice

Jena, I was Dx'ed with the SCLE "subset" of SLE in summer 2000. I'd had years of trouble, such as headaches, joint pain and swelling, elevated sed rate, anemia, GI & urinary problems, fatigue, low-grade fever, hair loss, severe photosensitivity, mild neuro-like signs, etc. My rashes were on my upper arms and torso and looked, in their mature form, like perfect circles, then expanded outwards and faded WITHOUT scarring or depigmenting.

My anti-Ro finally turned positive, but my ANA stayed negative. My rheumie & dermatopathologist both told me ANA stays negative in maybe 1/3 or so of SCLE cases, it's thought because anti-Ro can sometimes "mask" the ANA.

Symptoms in Ro-lupus can extend throughout the whole SLE spectrum, I was told---but the odds of having the very worst SLE problems (kidney & CNS) are less in SCLE than in SLE. But that statement made me pay attention...

I was told Plaquenil is the drug of choice for such lupus, meaning systemic aspects but no active major organ involvement. And Plaquenil has helped me a lot. The antimalarials (like Plaquenil) are actually the LEAST of the three classes of lupus drugs. (Steroid and flat-out immune suppressants are the 2nd & 3rd tiers, respectively.) I had no qualms at all about taking it, as I really needed help.

I also practice strict sun protection measures (sunblock, hats with brims, long sleeves & pants, socks, and flat-out avoidance or minimizing peak exposure). So my days as a bathing beauty ended pretty abruptly!

Any questions, just give a yell, OK? But I hope you do the "right thing", because in lupus, skin problems are really an external sign of things going on beneath the surface. It's those hidden things that that are the core problem. Take good care, Vee