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#1 amberjolie


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Posted 12 August 2009 - 10:56 AM

After reading some of the other posts and how many of you have sine scleroderma...

When would I start seeing skin changes with what they said was crest? If they don't see anything over a certain length of time, is that when they would diagnose sine scleroderma?

Because I certainly don't have any skin changes yet, other than dry and itchy skin. No tightening & shininess, though.

Or is the fact that I'm losing flexibility in my one hand indicating that there probably are skin changes going on, that I just don't see yet?

#2 Jeannie McClelland

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Posted 12 August 2009 - 01:00 PM

Hmmm, that's a tough one to answer.

I have the 'sine' form, but I also had a non-rheumatologist classify it as CREST and my rheumatologist say limited cutaneous (on the basis of teleangectasia and dryness) systemic sclerosis when he was sending me for a consult with a throat guy, in order not to confuse him with the 'sine' bit.

When I was diagnosed I already had pulmonary fibrosis, pulmonary hypertension, esophageal issues, sicca syndrome, and Raynaud's. The only visible skin involvement was the teleangectasia and dryness - that was 3 years ago. I'm only now getting some tight, shiny skin on my fingers and legs and it doesn't seem to be progressing rapidly.

I'd asked my rheumatologist if 'sine' people get the typical skin involvement "never, sometimes, or always" and he said it's a sometimes thing.

If you are an orderly person, this lack of precision and definite answers can be really frustrating! :rolleyes:

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#3 amberjolie


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Posted 12 August 2009 - 02:47 PM

Oh, I am definitely an orderly person! I like to know exactly how to classify myself! :lol: