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Joelf

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Everything posted by Joelf

  1. Construction of a Frailty Index (FI) as a Novel Health Measure in Systemic Lupus Erythematosus (SLE). The SLICC-FI may be a useful tool for identifying patients with SLE who are most vulnerable to adverse outcomes. PubMed, J Rheumatol, 2020 Jan;47(1):72-81. (Also see Symptoms and Complications of Lupus) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  2. Advances in the Treatment of Scleroderma (SSc): Autologous Hematopoietic Stem Cell Transplant (HSCT). HSCT can be considered as an option in carefully selected patients with rapidly progressive SSc who have a risk of organ failure. Medscape, 1/2/2020. (Also see Stem Cell Transplantation) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  3. Americans are binge drinking more, greatly increasing health risks. The rise in binge drinking increases health risks: accidents, disease and early death. NBC Health News, 01/16/2020. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  4. High Prevalence and Disease Correlation of Autoantibodies Against p40 Encoded by Long Interspersed Nuclear Elements in Systemic Lupus Erythematosus. These autoantibodies may represent an early immune response against LINE-1 p40 that does not yet by itself imply clinically significant autoimmunity. PubMed, Arthritis Rheumatol, 2020 Jan;72(1):89-99. (Also see Diagnosis of Lupus) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  5. Defining genetic risk factors for scleroderma-associated interstitial lung disease (SSc-ILD) : IRF5 and STAT4 gene variants are associated with scleroderma while STAT4 is protective against scleroderma-associated interstitial lung disease. Further work is required to understand the genetic basis of lung fibrosis in association with scleroderma. PubMed, Clin Rheumatol, 01/08/2020. (Also see Pulmonary Fibrosis Diagnosis and Genetics) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  6. The International Scleroderma Network thanks Jack and Elizabeth Lewis for their monthly pledge support! Posted 02/16/2020.
  7. Hi Carol, Welcome to these forums! I'm very sorry to hear that you're experiencing such severe Raynaud's symptoms and the link I've included does have lots of tips about dealing with the problem. Although I do have Raynaud's, thankfully it doesn't affect me as badly as you describe. I have found that it's very important to keep my core body temperature warm, as this does affect the severity of the symptoms I experience. I would suggest that a few light layers of gloves would be more effective than thick woollen gloves, but unfortunately, gloves are not desperately practical when used for daily activities at home. Kind regards,
  8. When Life Throws You Curveballs, Embrace the "New Normal". For patients with life-altering illnesses or anyone just getting older, it helps to roll with the punches and make the best of the here and now. New York Times, 01/20/2020. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  9. High Incidence of New-Onset Joint Pain in Patients on Fluoroquinolones as Antituberculous Treatment. There is a high incidence of joint pain in patients receiving antituberculous treatment, when fluoroquinolones are administered as compared to pyrazinamide. PubMed, Respiration, 2020 Jan 14:1-7. (Also see Extrapulmonary Tuberculosis) 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 02/14/2020.
  11. Hi Inibini, I can sympathise a bit, because in the beginning my hands were very painful and my fingers were very swollen. I spent an absolute fortune having all my rings made larger, only to have to have them altered again when, due to my taking prednisolone, my fingers went back down again. I had bilateral carpal tunnel syndrome and had successful operations on them; in my case the carpal tunnel was entirely due to having scleroderma, so I would imagine that the operation for carpal tunnel is the same for people with or without scleroderma. However, I have no medical training and so therefore this is just my opinion. The best person to advise you is your doctor/scleroderma expert. Kind regards,
  12. Case Report: Spontaneous bowel perforation in the setting of colonic involvement with scleroderma (SSc). It is essential that clinicians faced with abdominal symptoms and signs in patients affected by SSc are able to quickly differentiate acute visceral perforation from benign causes. PubMed, BMJ Case Rep. (Also see Bowel Dysfunction) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  13. Cats and Risk of Schizophrenia. In the same study that found pet dogs reduce overall risk for schizophrenia, the researchers reported less positive news for cats. Healthy Living Magazine, January 2020. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  14. The International Scleroderma Network thanks Network for Good donors for their support! Posted 02/12/2020.
  15. B cell synovitis and clinical phenotypes in rheumatoid arthritis: relationship to disease stages and drug exposure. We demonstrate an ongoing B cell-rich synovitis in a larger proportion of patients with established RA that does not seem to be captured by standard clinimetric assessment. PubMed, Arthritis Rheumatol, 11/29/2019. (Also see Diagnosis of Rheumatoid Arthritis and B Cells and T Cells) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  16. Case Report: Autoimmune Hepatitis and Systemic Sclerosis: a Rare Association. Autoimmune hepatitis and systemic sclerosis may be associated, therefore patients with these diseases should be monitored closely. PubMed, Eur J Case Rep Intern Med. (Also see Liver and Spleen Involvement) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  17. 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 02/09/2020.
  18. Immune discovery 'may treat all cancer'. A newly-discovered part of our immune system could be harnessed to treat all cancers, say scientists. BBC Health News, 01/20/2020. (Also see Cancer) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  19. Negative regulation of dendritic cell (DC) activation in psoriasis mediated via CD100-Plexin-B2. Our results uncovered a negative regulatory mechanism for DCs activation in psoriasis, which was mediated via CD100-Plexin-B2 in a cell type- and receptor- specific manner. PubMed, J Pathol, 01/14/2020. (Also see Psoriasis and Psoriatic Arthritis and Dendritic Cells) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  20. 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 02/07/2020.
  21. Dipeptidylpeptidase 4 as a Marker of Activated Fibroblasts and a Potential Target for the Treatment of Fibrosis in Systemic Sclerosis (SSc). DPP-4 characterizes a population of activated fibroblasts and shows that DPP-4 regulates TGFβ-induced fibroblast activation in the fibrotic skin of SSc patients. PubMed, Arthritis Rheumatol, 2020 Jan;72(1):137-149. (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. Call to tax 'hidden' sugar in pre-mixed alcoholic drinks. Many "ready to drink" pre-mixed spirits are packed with excessive sugar and hidden calories and should be subject to a sugar tax like fizzy drinks, health experts say. BBC Health News, 01/21/2020. (Also see Food Guide) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  23. The International Scleroderma Network thanks United Therapeutics for their sponsorship support. Posted 02/06/2020.
  24. Depression and suicidality in psoriasis and clinical studies of brodalumab: a narrative review. Clinicians are urged to evaluate patients with psoriasis for psychiatric risk factors regardless of their therapy. PubMed, Cutis, 2019 Dec;104(6):361-365. (Also see Depression, Suicide Prevention and Psoriasis and Psoriatic Arthritis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  25. Hi Katie, Welcome to these Forums! Whilst I can see that you're obviously concerned, the symptoms you describe could relate to any amount of health problems and not necessarily scleroderma, which is a rare and extremely complicated disease to diagnose and treat; certainly not something that you may think you "might" have, after putting a few symptoms into a search engine. Please note I have no medical training, but the fact that you appear to have had innumerable different medical tests, most of which appear to be negative, would lead me to the same conclusion as your doctor. Far more concerning is the amount of anxiety you're experiencing. One thing that is certain to exacerbate any illness is the stress involved in trying to find a diagnosis, as stress and anxiety can cause hormonal and cellular changes in our bodies which can lead to a variety of medical problems and is particularly damaging for autoimmune diseases. I would suggest that some of the symptoms with which you're suffering could be due to your anxiety and stress. Anxiety is a symptom that needs to be addressed and minimised when one is dealing with a chronic illness such as scleroderma or any other medical problem and as it's perfectly normal to experience depression and anxiety along with illness, it may be beneficial for you to ask your primary care doctor for a referral for counselling if you're finding that your health issues are difficult to deal with. Kind regards,
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