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home:diseases:scleroderma [01.19.2019] – [Patient] sallieq | home:diseases:scleroderma [01.19.2019] – [Notes and comments] sallieq | ||
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+ | ==== Management ==== | ||
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Hypodermitis sclerodermiformis. Successful treatment with ultrasound. | Hypodermitis sclerodermiformis. Successful treatment with ultrasound. | ||
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This capillaroscopic score may represent a feasible and simple tool in SSc patients' | This capillaroscopic score may represent a feasible and simple tool in SSc patients' | ||
- | ===== interview | + | ===== Interview |
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look for content in https:// | look for content in https:// | ||
- | fix** reports Thu Oct 9th, 2014 " | + | //fix**// reports Thu Oct 9th, 2014 " |
- | Dixie posted Tue Jan 24th, 2012 17:44 to baypilot (Jen?) | + | //Dixie// posted Tue Jan 24th, 2012 17:44 to baypilot (Jen?) |
"I had hard white bumps on my right eyelid that is a result of calcification due to scleroderma. | "I had hard white bumps on my right eyelid that is a result of calcification due to scleroderma. | ||
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- | (SDJoy Dixie: The fact that you have Scleroderma certainly could explain the increasing issues with your lungs. That is a difficult disease to say the least, and then you apparently have advanced Sarcoidosis on top of that. We do not necessarily get better the first 2-3 years (at least) on the MP. We usually have a lot of IP and feel worse before we begin to feel better. It takes many (but not all) of us some time on the MP before our symptoms get better, and as you know, Scleroderma can do a lot of damage to organs. And as I'm sure you know there are no other good options (steroids, etc.) Hang in there (and follow the guidelines and advice carefully) and in the next couple years you should see some gradual improvements in your symptoms and then eventually larger improvements and real reversal of the disease process. The Dr. in Vermont is correct; it could/will definitely take some time to reverse the scleroderma' | + | (//SDJoy to Dixie//: The fact that you have Scleroderma certainly could explain the increasing issues with your lungs. That is a difficult disease to say the least, and then you apparently have advanced Sarcoidosis on top of that. We do not necessarily get better the first 2-3 years (at least) on the MP. We usually have a lot of IP and feel worse before we begin to feel better. It takes many (but not all) of us some time on the MP before our symptoms get better, and as you know, Scleroderma can do a lot of damage to organs. And as I'm sure you know there are no other good options (steroids, etc.) Hang in there (and follow the guidelines and advice carefully) and in the next couple years you should see some gradual improvements in your symptoms and then eventually larger improvements and real reversal of the disease process. The Dr. in Vermont is correct; it could/will definitely take some time to reverse the scleroderma' |
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- | Bobsyouruncle | + | //Bobsyouruncle |
I noticed this week that the scleroderma on my foot it healing up slowly. However, my skin in generally in poor shape with infected folices on my chest, legs and back often. Small wart-like skin-colored growths continue to appear (they have been for long time, new ones keep arriving). | I noticed this week that the scleroderma on my foot it healing up slowly. However, my skin in generally in poor shape with infected folices on my chest, legs and back often. Small wart-like skin-colored growths continue to appear (they have been for long time, new ones keep arriving). | ||
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- | Elijuh | + | //Elijuh |
" | " | ||
Last July after being on Minocin for a year for my Scleroderma, | Last July after being on Minocin for a year for my Scleroderma, | ||
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- | Prof M Scleroderma is a Th1 disease. It is suspected to be due to inappropriate activity of the collagen oligomeric matrix protein (COMP) during the formation of the skin. COMP is a protein which relies upon Vitamin D, at least in part, for its stability. You might even see improvement when you cut your daughter' | + | //Prof M// Scleroderma is a Th1 disease. It is suspected to be due to inappropriate activity of the collagen oligomeric matrix protein (COMP) during the formation of the skin. COMP is a protein which relies upon Vitamin D, at least in part, for its stability. You might even see improvement when you cut your daughter' |
Dr Alan Cantwell spent a lot of his professional life looking at the links between Th1 bacteria and Scleroderma. You will find one of his papers on the subject at http:// | Dr Alan Cantwell spent a lot of his professional life looking at the links between Th1 bacteria and Scleroderma. You will find one of his papers on the subject at http:// | ||
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- | Elijuh | + | //Elijuh// |
The vomiting is not something new and I am pretty sure it isn't totally IP. It is partly the gastroparesis from the Scleroderma. | The vomiting is not something new and I am pretty sure it isn't totally IP. It is partly the gastroparesis from the Scleroderma. | ||