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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.
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.
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
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