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I had a test positive for scleroderma. my previous rheumatologist believes I have it. My new one said lupus can cause random tests to be positive and I do not meet the score or diagnostic exam for scleroderma. However since then two more tests came back positive. I don't see my new rheumatologist for a month. Has anyone else had experience with this? I'm so scared because the tests that we're positive seem to be associated with the worst prognosis. 😔
Yes ma'am I was diagnosed in 2009 with sLE lupus and scleroderma. All the rhuemy's I have seen in 10 years have agreed. My new one here in Montana called it External mysititos which affect the muscles and tissues plus the skin. I am currently taking Cellcept plus still on Hydroxychloriquin(plaquenel) and prednisone. We are hoping with taking the cellcept I can get down to 5 mg of prednisone. Was told my scleroderma started when I was 13 or 14. I have to watch for any product that contain collagen. No gelatin (jello) or parabens. Hope this helps you. You are definitely not alone. I also take Turmeric for the inflammation.
@A MyLupusTeam Member thank you. I've had three different labs come back positive for scleroderma but I have no skin involvement yet. I've heard it's rare but you can have internal scleroderma without external symptoms. My new rheumatologist said I don't meet the diagnostic criteria despite the labs. He ordered his own labs and I've got to wait a month til my next appointment before I get results.
@A MyLupusTeam Member so sorry you have to keep waiting for a definitive diagnosis . Will be praying for you. It won't be long 🎶it's just around the corner.🎶
@A MyLupusTeam Member thank you for that! I've been trying to avoid parabens but I had no idea that could affect scleroderma. I will definitely check for both gelatin and parabens. I have no skin involvement yet so one Dr said I don't have it and another one said I'm flirting with it and it will probably progress.
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