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  2. Monoclonal antibody targeting BDCA2 ameliorates skin lesions in systemic lupus erythematosus (SLE). The data suggest that targeting plasmacytoid DCs may be beneficial for patients with SLE, especially those with cutaneous manifestations. PubMed, J Clin Invest, 2019 Mar 1;129(3):1359-1371. (Also see Antibodies in Lupus) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles. 
  3. Yesterday
  4.  Pulmonary veno–occlusive disease (PVOD) is highly prevalent in scleroderma (SSc) patients undergoing lung transplantation. Presence of PVOD may be an unrecognised contributor to the dismal prognosis in patients with SSc –pulmonary hypertenson–interstitial lung disease. PubMed, ERJ Open Res, 2019 Feb 11;5(1). (Also see Lung Transplants for Pulmonary Hypertension and Lung Transplants) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles. 
  5. Last week
  6. 8 Science-Backed Ways to Prevent Heart Attacks, According to New Guidelines. Experts have issued a new set of guidelines on the best ways to prevent first heart attacks, strokes and heart failure – and for the first time, they focus squarely on the patient. Time Healthland, 03/18/2019. (Also see Heart Involvement) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  7. The International Scleroderma Network thanks Jack and Elizabeth Lewis for their monthly pledge support! Posted 04/16/2019.
  8. Prevalence of and factors associated with dysfunctional low back pain in patients with rheumatoid arthritis. Strictly controlling patients' body weight and disease activity with methotrexate and avoiding spinopelvic malalignment through vertebral fracture prevention are important. PubMed, Eur Spine J, 03/08/2019. (Also see Symptoms and Complications of Rheumatoid Arthritis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  9. Evolving insights into the cellular and molecular pathogenesis of fibrosis in systemic sclerosis (SSc). After reviewing the major and emerging cellular and molecular mechanisms underlying SSc, this article looks to identify clinical applications where this new molecular knowledge may allow for targeted treatment and personalized medicine approaches. PubMed, Transl Res, 02/23/2019. (Also see Fibroblasts) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  10. The International Scleroderma Network thanks Gilead for their sponsorship support. Posted 04/14/2019.
  11. Thank you so much! I just would love to finally meet an expert, because every doctor I have ever met has never seen a case like mine. I appreciate you taking the time to answer my question. Thanks for the links. I'm so grateful to you.
  12. Giving Your Baby Peanuts Early On May Help Prevent Allergies, New Guidelines Say. Introducing peanuts early may help some babies avoid allergies, according to new guidance from the American Academy of Pediatrics (AAP). Time Healthland, 03/18/2019. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  13. Galectin-9 and CXCL10 as biomarkers for disease activity in juvenile dermatomyositis (JDM): a longitudinal cohort study and multi–cohort validation. Galectin-9 and CXCL10 were validated as sensitive and reliable biomarkers for disease activity in (J)DM and implementation of these biomarkers into clinical practice might facilitate personalized treatment strategies. PubMed, Arthritis Rheumatol, 03/12/2019. (Also see Dermatomyositis and Polymyositis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles
  14. Would you like to help scientists find a cure for scleroderma? Dozens of clinical trials for scleroderma and pulmonary hypertension are actively recruiting now. Review them and be sure to ask your scleroderma expert about the ones you are interested in. (Also see Current Clinical Trials and Scleroderma Experts) Posted 04/09/2019.
  15. Earlier
  16. Hi Olimpia, Welcome to Sclero Forums! I'm sorry you have concerns regarding SCL-70. As it happens, about 30% of people with non Hodgkins Lymphoma show a positive ANA, but without it being due to autoimmune disease. The studies about that are over 3 years old, so we won't link to them in the forums, however, you can Google the topic. Perhaps that's it? Or perhaps not. Only your rheumatologist, preferably a scleroderma expert if you are experiencing any symptoms of it, could know for sure. Even then, the illness is diagnosed based on symptoms, not blood work, which is why symptoms rule the day.
  17. TBH, I would be more worried about a diagnosis of non-Hodgkin's lymphoma then I would a diagnosis of scleroderma (neither of which are very nice). When diagnosed, I initially gave up because the anti depression medication I was given for my 'imaginary illness' caused side effects which gave the impression that my limited scleroderma had defused quite quickly. Once I had ditched the anti depressives (which I clearly didn't need), I began to feel more positive and began to take more exercise and built myself back up again. From being barely able to walk 3 years ago, I now walk 3 or 4 km per day, have been tent camping twice, have enjoyed 3 foreign holidays, have been learning to fly paramotors and doing a fair amount of DIY all of which I thought I would never again be able to do at the time. It's been hard work and every day is painful, but I will make the most of life for as long as I can, no matter how much it hurts. I will fight this as long as I can and will not give up until I have to, whether that is in a year, 5 years or 20 years. Positivity and tenacity can go a long way. Don't dwell on the negatives and focus upon what youcan do rather than what you can't. Above all, look after youself well and have as much fun as you can. Best wishes, Dimarzio.
  18. Hello my friend, Remember, one day at a time, otherwise everything can be so overwhelming. I had myself in the grave many times to find out it all wasn't so bad. Easier said than done, but don't worry until there is something to worry about. And even then I find out it wasn't as bad as it was in my mind. :)
  19. Its always frustrating when you feel you are not being heard. The relationship between you and your doctors are oh so important. I've been known to fire mine and move along to one I have better communication with. It's your life, your body and your dime. Remember they work for you. :)
  20. Thank you for taking the time to reply to me. To put my mind at ease (or not), I'm going to make an appointment with my doctor next month. I'm going on vacation this month and I'm trying not to let anything ruin it.
  21. Identification of regulators of the myofibroblast phenotype of primary dermal fibroblasts from early diffuse systemic sclerosis (dSSc) patients. Our results demonstrated the value of carefully–phenotyped SSc dermal fibroblasts as a platform for SSc target and drug discovery. PubMed, Sci Rep, 2019 Mar 14;9(1):4521. (Also see Fibroblasts) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  22. Did you know you can help raise scleroderma awareness? The nonprofit International Scleroderma Network offers scleroderma awareness bracelets! Bracelets for just $2.50 each with free shipping and handling! They say "scleroderma" on one side and "sclero.org" on the other. (Also see Get Scleroderma Awareness Bracelets) Posted 04/07/2019.
  23. I never talked to anybody before who felt these same sensations-I also feel like something "light" like a cobweb is touching my face, (especially around my eye lids) or something is crawling around on my head; my feet and hands do the burning prickly thing and now my rear end! Always with the crawly, spidery, sometimes even itchy sensations; I sure hope things get easier for you and your son.
  24. Hi. I have had trouble my whole life with "fibrous growths" in and on my organs (first kidney surgery at age 6 ) - multiple surgeries to repair "scar tissue" and "adhesions", hysterectomy and repair surgeries (early 20's) because of "fibrous growth bands" from 1963 to 1985 - lots of skin issues. I was told about 20 years ago (age 44) "Oh, you are just cold because you have Raynaud's-no big deal" - and I thought OK. I started getting weird red bumps on my face that would not go away, had trouble with my jaw and hands, cold and burning feet and toes, etc., etc., but I never got thick skin. I got TMJ, gout, weird rashes and arthritis . My sister was diagnosed with CREST about 15 years ago, and she is really suffering from lung issues. Since around 2008, I started having a lot of lower abdominal pain, then both upper and lower, since 2015 I have had 3 hernia repairs (inguinal, ventral and femoral), diagnosed with large hiatus hernia, inflamed stomach, bleeding stomach, had pancreatitis and my gallbladder removed, got diverticulosis and then some weird inflammation of my colon, heavy feeling in my chest, hard to take a deep breath, some coughing for no reason, all the while suspicious it was CREST. I am officially diagnosed with scleroderma a la Raynaud's, and have some of the other required conditions already (the REST part of it) but no Dr around me area knows what to do. I have lost 30 pounds since 2015 and continue to have some really bad and painful GI troubles - I live in a small town and finally got a Dr to even consider sine scleroderma, (only because the Raynaud's is so bad now I am cold all the time and the red spots are worse and now my hands and feet are actively turning colors and burning and I weigh 80 pounds) and now they want more invasive testing (scope tests). I am scared knowing this dang condition has dogged me a million years - I may be at the end of the line and no one is able to tell me what is actually happening and what I have to look forward to in the immediate future. I sure would like to have some useful information from other folks with sine scleroderma; unfortunately, my sister is not able to or doesn't want to communicate with me about this. Thanks for reading this and for any advice, and thanks to this forum. Lynnann
  25. Newly prescribed ADHD medications may cause psychosis, study finds. Certain medications used to treat ADHD in teens and young adults may be more likely to cause symptoms such as paranoia, hallucinations, delusions and hearing voices, a new study suggests. NBC Health News, 03/21/2019. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  26. The International Scleroderma Network thanks United Therapeutics for their sponsorship support. Posted 04/06/2019.
  27. Thanks for the replies. My doctor wanted to decrease the dosage so I would be under the threshold for increased risk of retinal toxity. My doctor said it would take several weeks for symptoms to return, if they do return. While I was on the higher dosage I didn’t feel “sick”. Now I feel like something is wrong and I don’t feel like myself. I will talk to my doctor. It’s hard when I have such minor physical symptoms — I feel that he may just brush off the fatigue and moodiness and attribute it to something else. And who knows, it could very well be unrelated.
  28. Early–stage predictors for treatment responses in patients with active lupus nephritis (LN). The change percentage of urinary protein-to-creatinine ratio >59% and the serum albumin >32.9g/l at the third month were valuable for predicting remission at the sixth month in LN. PubMed, Lupus. 2019 Mar;28(3):283-289. (Also see Treatments for Lupus) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  29. Case Report: Scleroderma–like syndrome in a woman with silicone breast implants – critical review of the literature. We present a case of the scleroderma-like syndrome in a 48-year-old woman with a broken silicone breast implant and a review the current literature on this issue. PubMed, Reumatologia, 2019;57(1):55-58. (Also see Artificial Joints and Silicone Breast Implants) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
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