Joelf

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About Joelf

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  1. Hi Cap, Welcome to these forums! I'm sorry to hear that your mother has been diagnosed with diffuse scleroderma and is so poorly. Please note I have no medical training (apart from a now out of date first aid certificate) so can't advise you on the best method of treatment for your mother. I do have lung involvement myself (non specific interstitial pneumonia) and I understand that antibiotics are not really of much use for scleroderma induced interstitial lung disease; like your mother I was treated with cyclophosphamide, which thankfully was very successful in my case. Lung Transplants, in most cases, are a treatment of last resort. This is because lung transplants are a very invasive procedure and they require a lung donor. I've included a link to our medical pages on Lung Transplants and also Severity and Prognosis for Scleroderma Pulmonary Involvement which I hope you'll find informative and helpful. Kind regards
  2. Current concepts regarding calcium metabolism and bone health in sarcoidosis. Vitamin D supplementation may be withheld in sarcoidosis patients with bone fragility, unless calcitriol levels are below normal limits. PubMed, Curr Opin Pulm Med, 2017 Sep;23(5):476-481. (Also see Sarcoidosis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  3. Scleroderma Hotline and Email Support Specialists are eager to help people affected by scleroderma and related illnesses, such as pulmonary hypertension. Simply email [email protected] or call our Hotline at 1-800-564-7099. Ask for your free information packet! Posted 09/26/2017.
  4. Hi Dottie, Welcome to these forums! I'm sorry to hear that you've been experiencing health problems and having tested positive for the SCL-70 antibody. I would just point out that a positive blood test does not necessarily mean that you will go on to develop scleroderma, as it is quite possible to have positive antibodies and yet never develop the full blown disease and vice versa, as many of our members can testify. I've included a link to our medical page on Causes of Scleroderma: Environmental, which also contains a link to one of our Patient and Caregiver Stories, Phyllis C: Scleroderma, regarding the World Trade Centre, which I hope you will find interesting and helpful. Kind regards,
  5. Severity and features of frailty in systemic sclerosis–associated interstitial lung disease (Ssc-ILD). This study showed that frailty is highly prevalent in SSc–ILD patients and may help identify those less likely to tolerate potentially toxic pharmaceutical therapies or lung transplant. PubMed, Respir Med, 2017 Aug;129:1-7. (Also see Symptoms and Complications of Pulmonary Fibrosis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  6. Hi Dimarzio, I can't imagine that it would be available on the NHS (much too expensive), even somewhere like The Royal Free Hospital, who are very au fait with the latest treatments for scleroderma (although it might be worth approaching your doctor to see if a) they've ever heard of it and b) if they would be prepared to refer you for treatment.) Kind regards,
  7. 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.
  8. 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,
  9. 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.
  10. 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.
  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.)