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Real members of myPHteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Does anybody else have PAH related to SCLERODERMA? And if so what meds do you take to treat both diseases?

A myPHteam Member asked a question 💭
Marinette, WI
August 29, 2023
 · 
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Answer Summary

Members shared their experiences managing both scleroderma and pulmonary arterial hypertension, with several describing medication regimens... Read more

Members shared their experiences managing both scleroderma and pulmonary arterial hypertension, with several describing medication regimens that commonly included Opsumit and sildenafil (or tadalafil) for PAH, along with Cellcept for scleroderma and Ofev for interstitial lung disease. Many community members described the emotional challenge of losing the ability to do activities they once loved, like gardening, and emphasized the importance of pacing themselves and listening to their bodies. A recurring theme was mutual support through prayer, encouragement, and genuine concern for one another's well-being, including checking in about specific symptoms and upcoming doctor visits.

A myPHteam Member

Hi Alex, I will definitely let you know what I find out. Actually today it does seem alot better. But the day is young yet and I haven't been on it to much yet. Have a great day Alex! 🙏🙂💛

September 29, 2024
A myPHteam Member

Hi Cindy, been watching cricket but they've stopped for lunch. I'm pleased to hear your foot hasn't gone from bad to worse. I hope you get a constructive meeting with your PCP and that something helpful comes of it.🙏Do let me know how you go on. 🤗

September 29, 2024
A myPHteam Member

Good morning Cindy , I'm wondering how your leg is today, is it still swollen, is it red and inflamed looking, is it giving you any pain? I hope not 🤗

September 29, 2024
A myPHteam Member

My rheumatologist has me on hydroxychloroquinine. Full blown Crest Syndrome. I take Opsumit and Tadalafil for PAH, might add a third soon. On oxygen 24/7. I do what I can. Getting harder to work in my flower beds and garden, I just take it slow. Hope you have a good day!

March 14, 2024
A myPHteam Member

Sorry to hear about your husband. Scleroderma can cause so many other problems. I take cellcept also for Scleroderma. And for pah I take sildenafil, opsumit, uptravi and a water pill.I will keep you and your husband in my thoughts and prayers. And thank you for answering my question. God bless you and your husband.

August 31, 2023

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