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  1. Yesterday
  2. 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.
  3. Last week
  4. 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.
  5. 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.)
  6. 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.
  7. 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.
  8. 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.
  9. 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.
  10. 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.
  11. 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.
  12. 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,
  13. 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,
  14. 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 .
  15. 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.
  16. 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
  17. 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.
  18. 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.
  19. The International Scleroderma Network thanks Gilead for their sponsorship support! Posted 09/14/2017
  20. Earlier
  21. The roles of dermal white adipose tissue (DWAT) loss in scleroderma skin fibrosis. The loss of skin–protective mechanisms with DWAT loss further contributes to skin fibrosis and injury. PubMed, Curr Opin Rheumatol, 08/10/2017. (Also see Skin Fibrosis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  22. Interesting article Jo, Some food for thought there. Cut out cereals in my diet considerably a few weeks ago to great effect after being told by the experts for years that we need to eat more fibre. Eat lots of salad, which doesn't seem to do too much harm.
  23. How to beat health problems no one likes to talk about. When it comes to digestive troubles we’re remarkably shy, with more than 40 per cent of people never discussing their symptoms with a doctor. Mail Online, 08/22/2017. (Also see Gastrointestinal Involvement) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  24. Hi Bud, Welcome to these forums! I'm sorry to hear that your son Jesse has recently been diagnosed with scleroderma and is going through the enrollment process for stem cell transplant trials. I'm afraid I'm unable to advise you from personal experience, as I'm in the UK and a different system applies here. However, I've included links to our medical pages on Disability Resources, Free and Low Cost Medication Programs, and Patient Support Programs, which do include information about Medicare and also Stem Cell Transplantation, to give you some more information. I've also found the following threads: Disabilty / Medicare. Medicare Supplements and Prescription Plans. I do hope that these threads will be of help to you and I expect that we will have other members along, who can give you some first hand advice. Kind regards,
  25. My son, Jesse, has been diagnosed with Scleroderma. We are going through the enrollment process for Dr. Burts' stem cell transplant trials at Northwestern Memorial Hospital in Chicago. Jesse's only form of insurance is Medicare. Dr. Burts' staff has suggested that we appeal to this forum for information regarding expenses after Medicare. If anyone out there has gone through or is going through a similar situation, please contact us and give us an idea of what we can expect and plan for after Medicare coverage. Thank you for your support. I look forward to any information regarding this topic. Bud Eulate
  26. Lupus nephritis and B–cell targeting therapy. The combination of different targeted approaches as well as a focus on new clinical end–points may be strategies to identify new therapeutic options. PubMed, Expert Rev Clin Immunol, 08/11/2017. (Also see Treatments for Lupus 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.
  27. The Journal of Scleroderma and Related Disorders (JSRD) JSRD is currently in its second year of publication, and has been expertly launched by Professors Marco Matucci-Cerinic and Masataka Kuwana who have developed an internationally focused editorial board with many globally renowned key opinion leaders. (Also see Dr. Marco Matucci-Cerinic and How to Volunteer) Posted 09/11/2017.
  28. Hi Kamlesh, I'm so sorry that you're still having problems and I've emailed you. Kind regards,
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