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Found 16 results

  1. The International Scleroderma Network thanks Genentech for their generous grant to tackle patient education for scleroderma and pulmonary hypertension from 2012 to present. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  2. The International Scleroderma Network thanks Gilead for sponsorship support to tackle scleroderma and pulmonary hypertension from 2011 to present. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  3. The International Scleroderma Network thanks Actelion Pharmaceuticals US, Inc. for their sponsorship support, from 2006 to present. (Also see: What is Scleroderma? and What is Pulmonary Arterial Hypertension?) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  4. The incidence rate of pulmonary arterial hypertension (PAH) and scleroderma renal crisis (SRC) in systemic sclerosis patients with digital ulcers on endothelin antagonist receptors (ERAs) and phosphodiesterase-5 inhibitors (PDE5i). Treatment with ERAs and/or PDE5i appeared to delay the occurrence of SRC. PubMed, Rheumatology (Oxford), 2020 Aug 26;keaa401. (Also see Pulmonary Hypertension, Kidney (Renal) Involvement and Research on Digital Ulcers) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articl
  5. Hi, I am new here and I am from Greece. My English is not very good. My story with all that stuff began in 2006, with a Raynaud's attack. I was on vacation in a beach and I was swimming. This has repeated many times since then. I searched in Google and found about autoimmune diseases. I went to a rheumatologist, who ran blood tests with confused results. I have visited 4 rheumatologists until now. I have telangiectasia for 30 years. I am 51 now. I have some problems with my heart. Two days ago, I visited my cardiologist and he found 40mmHg pulmonary pressure. My world collapsed. I am
  6. Complement alternative pathway activation associated with pulmonary hypertension in lupus nephritis patients. Activation of the complement alternative pathway may be involved in the pathogenesis of pulmonary hypertension in lupus nephritis. PubMed, Lupus, 2019 Jul 11:961203319860192. (Also see Symptoms and Complications of Lupus and Pulmonary Hypertension) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  7. Reduced right ventricular output reserve in patients with systemic sclerosis (SSc) and mildly elevated pulmonary arterial pressures (mPAP). These findings give further evidence for the clinical relevance of mildly elevated mPAP in patients with SSc. PubMed, Arthritis Rheumatol, 01/07/2019. (Also see Secondary Pulmonary Hypertension) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  8. Prevalence of auto–antibodies associated to pulmonary arterial hypertension in scleroderma – A review. The available evidence points in the direction of a strong association between auto–immune mechanisms and pulmonary hypertension in the setting of scleroderma. PubMed, Autoimmun Rev, 10/11/2018. (Also see Pulmonary Hypertension and Antibodies) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  9. Serum biomarker for diagnostic evaluation of pulmonary arterial hypertension in systemic sclerosis (SSc–PAH). The combination of Midkine and Follistatin-like 3 can serve as an SSc–PAH biomarker and are potential drug targets for this rare disease population. PubMed, Arthritis Res Ther, 2018 Aug 16;20(1):185. (Also see Pulmonary Hypertension Diagnosis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  10. Case Report: Systemic scleroderma–related interstitial pneumonia associated with borderline pulmonary arterial hypertension. The clinical condition improved dramatically with a combination therapy of an antifibrotic agent, pirfenidone for 12 months, and the dual endothelin receptor antagonist, macitentan, with prednisolone. PubMed, BMJ Case Rep. (Also see Treatments for Pulmonary Hypertension) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  11. Pulmonary arterial hypertension (PAH) in the setting of scleroderma (SSc) is different than in the setting of lupus: A review. This review highlights the differences between SSc–PAH and Lupus–PAH. PubMed, Respir Med, 2018 Jan;134:42-46. (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.
  12. Amanda Thorpe has produced another video, entitled Treatments for Pulmonary Hypertension in Systemic Sclerosis (Scleroderma). Did you know that Pulmonary hypertension secondary to systemic scleroderma can have a poor outcome, if untreated? (Also see: Scleroderma Videos, Amanda Thorpe and How to Volunteer) Posted 10/16/2014. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  13. The results of my lung CT scan came in and the fibrosis in my lungs has increased. Along with ground glass I now have an area of honeycombing, a more advanced form of fibrosis. I started oxygen therapy a few weeks ago due to desaturating on a six minute walk test and a decline in lung function on my pulmonary function tests. I consulted with the pulmonary doctor at the scleroderma center and he is submitting my records for lung transplantation to two centers in my area. I do not need a lung transplant at this time, I may never need one, this is just to find out if I would even qualify. I have
  14. This has been a full "Not Medically Free" week between dealing with insurance, pharmacies, doctors, testing and not just for me this time but also for my husband who will be having surgery next week...we had so many CT scans and x-rays between the two of us that we must have been positively glowing!!! In a previous post I told you my pulmonary function had declined: total lung capacity went from 78% to 61%, diffusion dropped to 37%, I desaturated on the 6 Minute Walk Test. I am definitely more short of breath, especially on exertion, and am working on setting up oxygen therapy. Yesterday m
  15. Has anyone used Revatio for PAH and if so did you experience side effects? I am having headaches and sleepiness which are counterproductive to say the least. Did the side effects decrease with time? Thanks, Lynne CREST with PAH
  16. My mum has pulmonary hypertension due to scleroderma; the doctors have said it's quite severe. Does anyone know of anything that can be done?
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