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  2. 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 Please note I have no medical training (apart from a now out of date first aid certificate) so can't advise you on the best method of treatment for your mother.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
  3. Today
  4. 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.
  5. 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.
  6. I am new to the forum, but struggling to deal with understanding how serious the situation is for my mother who is being treated in South Africa. She was recently diagnosed with diffuse scleroderma at 73. She had started getting swollen ankles, hands and hardening of the legs, as well as very short of breath. After initial diagnosis she spent a week in hospital and was discharged with an asthma pump. About 10 days later she was back in after struggling to breathe and passing out. She was into ICU on the 18th of August and they did a biopsy as none of the antibiotics they gave her were working on the pneumonia which they'd diagnosed. The biopsy confirmed interstitial pneumonia and they could tell she was having an autoimmune response to the antibiotics so they gave her a dose of Cyclophosphamide. She was sedated for 36 hours and spent a week recovering from the ICU Psychosis, before being moved to the general ward. She made good progress and was due to be discharged last week, about 4 weeks after the start of the ICU experience. The day before discharge she was walking a little without constant oxygen, but seemed to deteriorate rapidly and the following day they wanted to move her back into ICU. Infection markers were up and she had a urinary infection and the breathing had become very bad again. By Sunday she was being put on a ventilator and fully sedated. It's Tuesday today and although the infection markers have improved, they say the lungs are very stiff and hard. I just don't know what else they can try. I have asked them about the option of a lung transplant as I have read it is an option for Scleroderma patients with lung involvement. They have told me they will speak to other consultants about this option. I didn't realise it could get this bad so quickly and wondered if anyone else had been in this type of situation and made a recovery to a reasonable level. I know there is no cure, but I don't want to give up hope.
  7. Long term exposure to silicone and masonary dust has been cited, but nothing I have seen suggests that a single or short term exposure may be a cause. Mind you, I think the powers that be keep quiet about a lot of things out of a fear of mass litigation.
  8. Ma'am, Thank you for your response and the article provided. My medical issues have been going on for 3+ years now. My primary care physician and I believe that there is a link between my gastroparesis and the SCL results based on some of the research done and other symptoms that become pretty severe (abdominal pain, severe migraines, bone pain where I am unable to walk independently or it feels as though my hips & spine are often getting stuck, etc.) and the list goes on. It has been incredibly difficult for the specialists that have seen me to truly figure this out and this situation has debilitated me to the point that I have not been able to go to work for 6 months now. I have come to the forum in the hopes to learn more from others experiences and see how I might be of service to others. Once again, thank you for your post. Dottie
  9. 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,
  10. Hi everyone, I have tested positive for SCL-70 systemic, and having some additional medical issues. I was curious to know if anyone in this forum was at the Pentagon during 9/11 or the twin towers and since then has been diagnosed with SCL? I know that 2 other individuals under the care of my Primary care physician have been affected and we were all at the Pentagon during 9/11. I am trying to do research and see if there is a link to environmentally induced autoimmune disease.
  11. Yesterday
  12. 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.
  13. 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,
  14. Thanks Jo, I can't seem to find anyone in the UK willing to provide this treatment though. In any event, it is pretty costly due to the frequency of treatment required.
  15. Last week
  16. 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.
  17. 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,
  18. 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.
  19. 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.
  20. 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.
  21. 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?
  22. 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.
  23. The International Scleroderma Network thanks Genentech for their sponsorship support! Posted 09/21/2017.
  24. 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.
  25. Earlier
  26. 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.
  27. 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.)
  28. 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.
  29. 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.
  30. 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.
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