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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.
Joelf posted a topic in NewsCyclophosphamide 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.
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
Joelf posted a topic in NewsMycophenolate mofetil for scleroderma–related interstitial lung disease. Although this study does not provide evidence for equivalency to cyclophosphamide, its clear benefit in patient tolerability made MMF the preferred initial treatment in an arena with limited options. The Lancet Respiratory Medicine, 2016 Nov;4(11):e53. (Also see Pulmonary Fibrosis Treatments: Cellcept) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.