All Activity

This stream auto-updates   

  1. Past hour
  2. More Young People Are Dying of Colon Cancer. Now a new study has found that younger Americans are dying of colorectal cancer at slightly higher rates than in previous decades, and no one really knows why. New York Times, 08/22/2017. (Also see Cancer) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  3. Hi Dimarzio, I've found a rather old thread on Plasma Exchange. There's also an article Successful long-term (22 year) treatment of limited scleroderma using therapeutic plasma exchange: Is blood rheology the key? which I hope you find helpful and informative. Kind regards,
  4. Today
  5. Yesterday
  6. Symptoms of chronic fatigue syndrome/myalgic encephalopathy (CFS/ME) are not determined by activity pacing when measured by the chronic pain coping inventory. Activity pacing does not appear to be a significant determinant of pain, fatigue or disability in people with CFS/ME when measured with the chronic pain coping index. Physiotherapy, 08/10/2017. (Also see Chronic Fatigue Syndrome) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  7. Last week
  8. Preclinical Study Shows IVA337’s Potential in Treating SSc Skin and Cardiovascular Complications. Inventiva’s lead therapy candidate IVA337 for the treatment of systemic sclerosis (SSc) was shown to prevent the progression of lung fibrosis and the remodeling of blood vessels in preclinical animal models of lung fibrosis and systemic sclerosis. Scleroderma News, 07/28/2017. (Also see Clinical Trials) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  9. I tend to disagree with New York Times article. Our blood is purified by our lungs and lungs remove all toxins from blood and purifies blood. Ancient Yoga or specifically what they call breathing exercises help remove toxins. Our blood takes out most of the toxins from every cell of body and removes these toxins by carrying blood to lungs. There are large number of studies done in India regarding this form of Yoga. I have pretty bad lung issues for over 20 years, and I have been able to stabilize my lungs at the same level.
  10. I've been doing a little research on this and have been a number of articles and studies to read through, but this interview gives a clear, non technical interpretation: https://sclerodermanews.com/2016/05/17/tpe-for-scleroderma-interview-with-edward-harris/ Has anyone else done any research of this interesting treatment, know of any UK centres that might consider offering this or have any idea of the costs involved, bearing in mind that the NHS will not provide it?
  11. Can You Sweat Out Toxins? It’s unclear whether the minuscule amounts of toxins that can be measured in sweat actually indicate a health concern. New York Times, 08/18/2017. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  12. The International Scleroderma Network thanks Genentech for their sponsorship support! Posted 09/21/2017.
  13. Relevance of ultrasonography in assessing disease activity in patients with idiopathic inflammatory myopathies. A mixture of muscle edema and atrophy was detected depending on disease activity and duration. PubMed, Int J rheumatologist Dis, 08/07/2017. (Also see Myopathy and Myositis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  14. Changes in pulmonary exercise haemodynamics in scleroderma (SSc): a 4–year prospective study. Patients with SSc developed mild deterioration of pulmonary exercise hemodynamics and exercise capacity over a 4–year follow–up period, indicating mild but significant progression of pulmonary vascular disease. PubMed, Eur Respir J, 2017 Jul 13;50(1). (Also see Pulmonary Hypertension) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  15. Hi Dimarzio, Sorry to hear that you have such a problem getting the flu vaccine. Initially my doctors' surgery were not keen to administer it to me, as I was too young when first diagnosed; however, I kicked up quite a fuss and told them that I wouldn't have been going to The Brompton for invasive, strong treatment if I merely had a head cold and since then I've always received it with no trouble. In fairness to my doctors, I've always received good support for scleroderma from them (even if they don't have the specialist knowledge for it.)
  16. I have to lie to even get a flu vaccine. GP won't do it as I am not old enough to qualify and they dont class scleroderma as a need. Local pharmacies refuse to administer to anyone with an auto immune disease.
  17. Ear infections dropped after this vaccine hit the market. Rates of ear infections have fallen sharply since two new vaccines hit the market, researchers reported. Health Today, 08/07/2017. (Also see Autoimmune Ear Diseases) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  18. Not particularly worried about the bottom end, but I have heard heard mixed reaction from those that have had top end, some saying that they feel like they are choking and others who say it is no big deal. I do wonder if it may have something to do with who is actually carrying out yhe procedure along with their experience and how much care they take.
  19. Clinical manifestations of Behçet’s disease (BD) depending on sex and age: results from Japanese nationwide registration. We showed that clinical phenotype in early phase of BD was different depending on onset age and sex. Rheumatology, 08/08/2017. (Also see Behçet's Disease) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  20. Earlier
  21. Hi Bud, I'm sorry to hear about your son Jesse. Have you looked into a supplementary insurance? I have Medicare, but I also pay for a supplement insurance that pays for everything Medicare doesn't. Just a thought. Best to you all.
  22. Mechanics and prognostic value of left (LV) and right ventricular (RV) dysfunction in patients with systemic sclerosis. RV dysfunction was associated with adverse outcome, independent of and incremental to clinical and LV deformation parameters in SSc. European Heart Journal, 08/11/2017. (Also see Cardiac (Heart) Involvement) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  23. Hi Maranjo, Welcome to these forums! We do recommend that our members consult a scleroderma specialist/dermatologist; however, it may be in your case that your dermatologist is not overly concerned, as morphea can sort itself out and often fades on its own within three to five years, even without any treatment. As per the earlier replies to this thread, UVA1 Phototherapy is now considered to be the first line of treatment. Please note I have no medical training, apart from a now out of date first aid certificate, but I would suggest that if it appears to be worsening and you're feeling worried about it, you should go back to your dermatologist and discuss a possible referral to a scleroderma specialist. Kind regards,
  24. Hi Clementine, Thankfully I don't have any significant gut involvement so the pleasure of an endoscopy and/or a colonoscopy has eluded me. My husband (who doesn't have scleroderma) has had two and is not anxious to have anymore. I have no medical training, but would suggest that, if like me you don't have the gut involvement, it may not be necessary to have one. However, your scleroderma expert is really the best person to advise you. Kind regards,
  25. Hi Clementine, My son has an endoscopy every 12-18 months because he needs his esophagus stretched or has stomach pain from an ulcer. I suppose it would depend on your symptoms; he just goes in when he's symptomatic. Take care, Everyone. Margaret Mom to Gareth, 29 years old, DS/ASD .
  26. How often do you all get upper endoscopies and or colonoscopies? I know after age 50 a lot of people get the latter, but for scleroderma purposes how often does your Dr ask you to get them? I'm way over due on both and really don't want to get either. I've had them and don't think they are a big deal but I just don't want the expense or to deal with it but I know I should.
  27. Hi I have just been diagnosed with Morphea. My dermatologist did a biopsy and that is when I found out. He did not want to do any follow up. I went to my general practitioner and he had never seen Morphea before. I go back to my general practitioner in a few weeks but at this time he does not think I need a specialist. I really do not know what my next step should be. Any help would be appreciated Thanks Maranjo
  28. What are 'depression naps' and are they a sign of trouble? A variety of studies indicate that between 65 to 90 percent of adult patients with major depression experience some type of sleep problem. Health Today, 08/11/2017. (Also see Depression and Sleep Disorders) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  29. The current therapeutic options for Crohn's disease (CD): from medical therapy to intestinal transplantation. CD treatment is mainly medical, leaving endoscopy and surgery for a complex course. PubMed, Expert Rev Gastroenterol Hepatol, 08/14/2017. (Also see Inflammatory Bowel Disease) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  30. The International Scleroderma Network thanks Gilead for their sponsorship support! Posted 09/14/2017
  1. Load more activity