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Scleroderma and Raynauds

Autoimmune Diseases | Last Active: Mar 14 10:30am | Replies (9)

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@arlenelmh

I had Covid in January 2023 that was mild on my respiratory system, but with awful Covid fingers and toes. After it resolved I had Raynaud's off and on. In summer 2024 I was found to have anti-nuclear antibodies in a centromere pattern with a titer >1280 and specific to centromere b at >8.0. My hands were puffy. It took 6 months to see a Rheumatologist. By then I had developed many telangiectasia on my shoulders/trunk and inside my lips. I have a few on my face and hands. He wanted me to start taking mycophenylate (Cellcept), but that frightens me. My ANA is suggestive of limited systemic scleroderma, but the speed of onset and shoulder involvement suggests the more deadly diffuse variation. I am a biochemist by training and found studies showing that over active Toll-like 4 receptors are involved in the limited SSc type of disease. My docs wouldn't prescribe it as off label, but I was able to get an online script for low dose naltrexone and began it in late January at 1.5 mg nightly. I'm currently taking 3 mg nightly. My fingers are now back to normal. I saw a Rheumatologist at Stanford via telehealth. They took it in stride as it seems it's given for other autoimmune diseases. My local Rheumatologist is now more open to it. He is doing all if the right tests to check my lungs and heart, but also testing for past viral infections that might come back if I do agree to the cellcept. You might discuss Low Dose naltrexone with your doctor to see if it will help you too. I don't think there will be a clinical trial because it's too inexpensive and pretty much freely available now.

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I would also recommend joining this other forum on Inspire specific to scleroderma. I am blockwd from providing the link.
Everyone on it has scleroderma or is supporting someone with it.