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Hi, everybody--
Any insight would be great. I'm an unusual case, I guess. And I feel guilty that I am a probable lupus patient who feels great and has never had joint pain or other lupus symptoms like lack of energy. I do have potential malar rash, but it may also be due to rosacea because it is brought out by thermal heat more than the sun.

Symptoms:
I have highly positive ANA 1:1280+ (nucleolar) for a few months now.
Also had homogeneous 1:160.
Borderline positive rheumatoid factor,
anti DS DNA positive (and increasing slightly over past couple months). ANCA positive with atypical perinuclear pattern.
Borderline ACE positive. (I also have lung nodules and adenopathy.)
SCL 70 and ACA are negative.
No skin changes characteristic of scleroderma.
But I have had constant, albeit mild, acid reflux for three months. I'm on one medication, 40 mg of Protonix for that and it helps tremendously.
My C4 fluctuates between low normal and just below normal.
CBC panel came back normal. Doc is doing kidney blood and urine and antiphospholipid tests now.

But scary part is she asked me if I wanted to go on treatment now. She said it's Prednisone and it's a "lifelong treatment". I thought that people could go into remission at some point...that most folks do. But she said that can't be predicted. She added that Plaquenil doesn't work for months, so they always put people on Prednisone first and also possibly Plaquenil. She agreed to wait a couple more months and continue to test my blood and watch me closely before putting me on medication since I feel so great. Has anyone else gone on medication before they feel poorly? I went to a lupus seminar over the weekend, and one doc said that there was a study that showed that people with early/incomplete lupus (like I may have) do well when put on a preventative Plaquenil regimen. It supposedly helps prevent kidney disease as well as alleviate join pain, etc. I'd love to hear any thoughts on any of this.

Thanks, everybody!





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