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Found 7 results

  1. Nintedanib in Progressive Fibrosing Interstitial Lung Diseases. In patients with progressive fibrosing interstitial lung diseases, the annual rate of decline in the forced vital capacity was significantly lower among patients who received nintedanib than among those who received placebo. PubMed, N Engl J Med, 2019 Oct 31;381(18):1718-1727. (Also see Clinical Trials and Treatments for Pulmonary Fibrosis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  2. Prognostic factors for primary Sjögren's syndrome-associated interstitial lung diseases (pSS-ILD). Lower %FVC and higher serum KL-6 levels are predictive factors for poor outcome in patients with pSS-ILD. Respiratory Medicine, 11/12/2019. (Also see Symptoms and Complications of Sjögren's Syndrome) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  3. Performance of a new quantitative computed tomography index for interstitial lung disease (ILD) assessment in systemic sclerosis (SSc). This new composite CT index for SSc-ILD assessment could be sufficiently sensitive for capturing early lung density changes in visually ILD-free patients. PubMed, Sci Rep, 2019 Jul 1;9(1):9468. (Also see Pulmonary Fibrosis Diagnosis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  4. Augmented concentrations of CX3CL1 are associated with interstitial lung disease in systemic sclerosis (SSc–ILD). The CX3CR1/CX3CL1-biological axis may be involved in recruiting antibody secreting plasma cells to SSc lungs, thereby contributing to the immune–mediated pathobiology of SSc–ILD. PubMed, PLoS One, 2018 Nov 20;13(11):e0206545. (Also see Pulmonary Fibrosis Diagnosis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  5. Patients with systemic sclerosis–associated pulmonary arterial hypertension express a genomic signature distinct from patients with interstitial lung disease. Many gene expression changes occur early in the disease course, potentially allowing early detection. Journal of Scleroderma and Related Disorders, 03/22/2018. (Also see Prognosis of Pulmonary Hypertension) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  6. Cyclophosphamide for connective tissue disease–associated interstitial lung disease. Researchers may consider comparing cyclophosphamide versus antifibrotic agents, or comparing both versus placebo, in particular, for those with evidence of rapidly progressive fibrotic disease, who may benefit the most. PubMed, Cochrane Database Syst Rev, 01/03/2018. (Also see Treatments for Pulmonary Fibrosis: Oral and IV Cyclophosphamide) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  7. Hi everyone, it's time for my biennial check-in. I do these for newer members who are learning to cope with a frightening diagnosis. Let's see, it's been 11 years since I landed at the Center of Excellence where I was diagnosed with systemic sclerosis sine scleroderma (also called limited), pulmonary hypertension, and interstitial lung disease. So how am I after a decade plus of SSc? Great! I've developed supra ventricular tachycardia, had scary few months when my bone marrow was producing very few white blood cells and neutrophils, and the GI issues have all progressed, but on the whole I'd say I'm fantastic. I need more O2 when I go hiking, but bear in mind I live at 5384'/1614m and hike much higher than that. We still travel, although flying with a portable O2 concentrator requires lots of extra time at security and the boarding gate as well as needing to be scrupulous about the airline's paperwork (beware codeshares!). Unfortunately, I still do all my own housework, gardening, firewood lugging, and shopping~ Lest I sound like a Pollyanna, no, it's not always easy and some days it's just plain hard. I'm grateful to my doctors and grateful that I've reached 70 in such good shape. I'd like my fellow scleroderma patients to know that it is possible to enjoy life despite this disease. If I had to give advice, I'd say never sit down and always choose the healthy option. Oh yeah, and don't be afraid to argue with your doctors, your relationship needs to be a partnership. I hope you all are still shining examples of courage and compassion. Fondly, Jeannie McClelland
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