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dycota13 (@dycota13)

Anyone have Scleroderma?

Autoimmune Diseases | Last Active: 2 days ago | Replies (36)

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I have had a diagnosis of lupus (and/or mysositis) for almost 20 years but my PCP did a full ANA panel and I have >8 anti-centromere antibody (previous ANA was 1:5120). So scleroderma is now being investigated. I watched a video that said "limited" meant limited skin effects to hands and a few other areas but that there were still internal effects, especially pulmonary hypertension, with that particular antibody.

I have been really sick this summer from the sun. My kidney function has dropped. And my hands and feet hurt. Hands are starting to curl up and look crooked. My appointment with the scleroderma program isn't until October unless I ask the PCP to push for an earlier appt. due to medical necessity. I am not there yet.

I hope someone is still on this thread! I know it is old.

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Replies to "I have had a diagnosis of lupus (and/or mysositis) for almost 20 years but my PCP..."

Hi, Windy Shores,

I'm sorry to hear about your health problems. Lots of sympathy headed your way.

I only have a tidbit of experience to share about scleroderma.

I tested positive for the SCL 70 antibody 3 times over the course of maybe 8 years. I have another autoimmune disease, so doctors do blood tests on me pretty frequently. I never had any of the visible skin indicators.

Apparently, there are different blood tests for scleroderma. Eventually, one of the labs sent my blood sample out to another test that showed I don't have scleroderma. My rheumatologist and dermatologist seem pretty confident that I don't have and won't get scleroderma based on that particular test.

Sorry to add another item to your list of considerations, but I hope maybe it will help.

Good luck and peace to you!