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Scleroderma (Systemic Sclerosis): Anyone else?
Autoimmune Diseases | Last Active: Apr 6 1:56pm | Replies (27)Comment receiving replies
I was recently diagnosed with systemic scleroderma too. I have anti-centrome antibodies off the charts. I was also prescribed Cellcept but am scared of the side effects- including reactivation of past viral infections so have not picked up the prescription. I was able to get an appointment at the Stanford Scleroderma center in August. So far Raynaud's and telangiectasia on face and shoulders. My heart also has many preventricular contractions, but lung function still fine. Low Dose naltrexone reduced a super high hematocrit and the hand puffiness.
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I will have a CT, pulmonary profusion and cardiac echo on May 12th, but my rheumatologist wants me to start the CellCept now based on my (also off the charts) numbers and my amazingly puffy fingers and hands. I'm thinking I may wait until after we get the results of those tests before starting. I've been uninsured or underinsured for a long time so I'm not even certain how long my numbers have been super high, and I've just gotten in the habit of hiding my hands. It's funny how people used to look at me weird, and comment because my hands were frequently purple or deathly white, and now they do because of their size (and I live in WV so that's saying something)
Low dose Naltrexone sounds scary too, but if it's helping with hematocrit levels and hand puffiness, and not causing awful side effects then that is great. Let me know if you decide to start CellCept. I'll let you know how my experience goes as well.