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Limited Scleroderma or CREST Syndrome: What helps?

Autoimmune Diseases | Last Active: Jul 25 9:13am | Replies (80)
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@csmirat

If I can help in anyway, I would love to discuss with you about Crest syndrome. Have had it for 22 years and if you have any questions please do not hesitate to reach out to me.

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hinac | @hinac | Mar 9, 2023

ANA positive. Centromere 1:2560.
Centromere B >8
No skin tightening.
Symptoms: fatigue, brain fog, joint pain /swelling (due to osteoarthritis), bloating/gas, shortness of breathe (lung X ray is fine), cold hands and feet but not blue

Rheumatologist told me I have autoimmune disease but he cannot diagnose a specific disease apart from osteoarthritis, since I don't have obvious CREST symptoms. He put me on low dose of hydroxychloroquine (200mg daily) and said to check every 6 months. I have been on hydroxychloroquine for 9 months and Centromere has worsened from 1:320 to now 1:2560. I feel pretty much the same and has learnt to live with the symptoms. Rheumatologist doesn't think I should be alarmed and think that my condition is "stable".

Should I seek second opinion or just wait and see if things worsen with time?

I am 56 and not very active due to osteoarthritis pain in fingers, hip and knees. Any thoughts based on your experience with CREST? Thanks.

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