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Found 12 results

  1. Hello, I really hope that you guys can help me a bit with following problem: One year ago I went to my rheumatologist because I had stiffness in my fingers and pain (in the morning and also in the night). It always gets worse in summer when It gets warmer (it is somehow also linked to sweating). There were days when I could barely write because my hands felt puffy, started to sweat a lot and were extremely stiff. My doctor found out that I have scl 70 antibodies, my ANAs have been always negative (I do regular check ups), no rheumatoid factor, all other Blood values are good. My doctor said that he doesn’t believe I have scleroderma but I am not imagining to have pain and the stiffness; when I am stressed or did a lot of physical activity the pain and stiffness spreads to my feet. I have the symptoms of my hands for 4 years now and nobody seems to understand it or is willing to help. I am a medical student so I did a bit of research and found out that scl 70 is mostly specific for the diffuser type, I went to a lot of doctors and got my organs checked, everything is fine until now, I don’t have lung involvement, my heart is fine (apart from a mild congenital regurgitation) and I do not have Raynaud's syndrome (I did a capillary bed examination). My rheumatologist said that I should not worry and he doesn’t want me to come again because, as I said, he doesn’t believe I have scleroderma. I am really worried and afraid. Even though I am mostly fine and "just“ have the symptoms of my hands, I worry that soon it might get worse and affect my organs.. well, sooner or later it will because I have the antibodies. My question is if I should do regular check ups of my organs (each year) and if some of you have had similar symptoms at the beginning and how long it took in your case until the disease spread? Oh and I have hashimotos disease, I don’t know if that’s relevant. Thanks in advance
  2. Estradiol (E2) levels are elevated in older men with diffuse cutaneous SSc and are associated with decreased survival. Our study expands on previous work implicating E2 in dermal fibrosis in SSc and associates E2 levels with internal organ involvement and survival. PubMed, Arthritis Res Ther, 2019 Apr 2;21(1):85. (Also see Diffuse Scleroderma) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  3. Skin Gene Expression Is Prognostic for the Trajectory of Skin Disease in Patients With Diffuse Cutaneous Systemic Sclerosis. Skin gene expression of biomarkers may provide guidance in decision–making about which patients should be considered for aggressive therapies and/or for clinical trials. PubMed, Arthritis Rheumatol, 2018 Jun;70(6):912-919. (Also see Diffuse Scleroderma and Skin Fibrosis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  4. Disability, fatigue, pain and their associates in early diffuse cutaneous systemic sclerosis (dcSSc): the European Scleroderma Observational Study. The European Scleroderma Observational Study highlights the burden of disability in early dcSSc, with high levels of disability and fatigue, associating with the degree of skin thickening (mRSS). PubMed, Rheumatology (Oxford), 11/30/2017. (Also see Diffuse Scleroderma) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  5. I'm trying the autoimmune protocol (AIP) diet in a desperate attempt to outwit very rapidly progressing diffuse Scleroderma and myositis. I was very fit two years ago,and only had Sjogren's symptoms this time last year, plus mild Raynaud's. It is my only hope. I'm having a scary time with huge changes each week, struggling with walking, eating, much pain etc. I haven't yet been started on any medication.Can anyone suggest what medication can help please? Also does anyone find the AIP or other diet helps? Thanks for any feedback.
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