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Found 13 results

  1. 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.
  2. 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.
  3. 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.
  4. Hello Scleropeeps, I've been away from the site for awhile, trying to pretend I have a normal (healthy) life I guess. It worked for a little while. I was feeling pretty good physically, was staying busy, felt like I had a purpose and was able to push through the bad days. These days, not so much. I've been battling my depression again. It has slapped me down hard this time - harder than I have ever felt it before. Every day is a struggle to get out of bed. BUT I DID manage to get myself to our local mental health clinic and am seeing a professional. One thing I thought might be good for me was to come back here and reconnect with you all. I think about my Scleropeeps often and how lucky we are to have this forum. I look forward to reading the forums and catching up. Many Spoons to All, Barefut
  5. 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.
  6. 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.
  7. Differences in Right Ventricular Functional Changes during Treatment between Systemic Sclerosis–associated Pulmonary Arterial Hypertension (SSc–PAH) and Idiopathic Pulmonary Arterial Hypertension (IPAH). In patients with SSc–PAH, echocardiographic RV function does not improve over time compared with that of patients with IPAH, despite institution of pulmonary artery vasodilator therapies. PubMed, Ann Am Thorac Soc, 2017 May;14(5):682-689. (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.
  8. Readdressing the entity of exercise pulmonary arterial hypertension (EPAH). Patients with collagen vascular disease, especially scleroderma, are at risk for EPAH and its presence indicates a relatively poor prognosis. PubMed, Respir Med, 2017 Mar;124:65-71. (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.
  9. 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.
  10. miocean

    Lungs

    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 a lot going against me: age, scleroderma, and the kidney transplant. I've known for a long time that the only thing that could be done for my lungs is a transplant so this is just at the investigative stage. I had a right heart catherization to test for pulmonary hypertension last week at the scleroderma hospital. This one was different from two previous ones as part of it was done during exercise. I had to lift saline bags until the point of exhaustion. I've had two previous heart caths but not under exercise so this was a new medical adventure! After the procedure the cardiologist told me I have "slight pulmonary hypertension but he has seen worse." He was forwarding the results to the pulmonologist and scleroderma specialist and told me they would prescribe the treatment. My scleroderma specialist called today with the results of the heart cath and I have fluid in my lungs. A diuretic will have to be found that is compatible with my anti-rejection meds and my nephrologist will need to decide which one. Once the fluid problem is solved I may need to go on something like Viagra, if it is compatible, for the pulmonary hypertension. I am waiting for the pulmonologist to weigh in on this. There have been very long days with doctors and the heart catherization reactivated my hospital related PTSD. There will be more doctor appointments coming up and more medications in the mix. I have a lot of questions that need to be answered, and will need to coordinate a lot of this. Longing for medically free days, miocean
  11. 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 my scleroderma specialist called with the results of my chest CT scan. I have increased scarring on the lower lobe of my left lung. You know it's not good when you hear the words "I'm sorry" and "there's really nothing we can do." I have already tried cyclophosphamide and had a toxic reaction, ended up in the hospital for 4 days, and I am taking Myfortic for anti-rejection of my kidney transplant at the highest dose possible. The doctor said if I wasn't taking the Myfortic the scarring would probably be worse. The next step is another Right Heart Catherization (make that #3 for me) to check for Pulmonary Hypertension. This one will be different than the others I have had, it will be without dye, part of it will be done at rest and part while I am lifting saline bags with my hands. A new medical adventure! If it turns out I can add that to my list of secondary issues it will have to be treated with a drug that is compatible with my kidney transplant medications. Although very serious, in my mind this is overshadowed by my husband's surgery. He is having a canalplasty to open up the bones in his ear to correct a condition known as "surfer's ear" where skin and bone grow to protect the ear canal. He has lost hearing in that ear. We are going to the best Otologist in the area for this, highly recommended by a friend who had the same procedure. Although it is out-patient it will be the first time my husband is under general anesthesia and I am concerned about that. I would be interested in hearing from anyone who has had this type of heart catherization. I know several here are being treated for PH and have been reading past posts. The good news is my kidney is 3 years old and doing well!!!! miocean
  12. 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
  13. 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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