Connect with others who understand.

  •   Learn from expert-reviewed resources
  •   Real advice from people who’ve been there
  •   People who understand what you’re going through
Sign Up Log In
All Resources Treatments A-Z Personal Assistant Help Center Crisis
Powered By
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.

Has anyone else been diagnosed with PAH associated with Scleroderma? If so, which drugs are you taking and how effective are they?

A myPHteam Member asked a question 💭
Ellijay, GA
March 5, 2024
 · 
Reactions

Answer Summary

Members connected over the shared experience of living with both scleroderma and PAH, a rare dual diagnosis that many had never heard of until... Read more

Members connected over the shared experience of living with both scleroderma and PAH, a rare dual diagnosis that many had never heard of until their own diagnosis. Several members shared their medication regimens, including Opsumit, sildenafil, tadalafil, Adempas, and Uptravi, with most reporting that Opsumit caused minimal side effects, while other drugs like Adempas and sildenafil sometimes caused issues like low blood pressure. A recurring theme was the importance of finding a specialized PAH clinic, pushing through challenging side effects, and supporting one another through the isolation and difficulty of managing two complex conditions at once.

A myPHteam Member

I also have PAH with scleroderma. I was first diagnosed in 2015 with scleroderma, ILD in 2018 and stated on 2L of oxygen. In 2019 PAH. Started on sildenophil and than switched to tadalophil. Oxygen saturation improved and I wasn't using oxygen as much. In August started Tyvaso DPI and have gone downhill. Now probably going to 6L oxygen. I have a pulmonary evaluation tomorrow. I am very depressed about this. Anyone else have experience with Tyvaso and is it helping?

March 11, 2024
A myPHteam Member

I just turned 61 on February 14. I don't know anyone that have either one neither. Inever even heard of Scleroderma until I was diagnosed with it in 2016 and I didn't hear of PAH until then. Thats when I read that Scleroderma could cause PAH. And My Rheumatologist mentioned PAH also. How is the Meds working for you?

March 5, 2024
A myPHteam Member

Are you going to a specialist in PAH?

March 5, 2024
A myPHteam Member

Just starting on this medication Am on Opsumit Thanks for the I information It’s tough having both conditions I understand how you can be depressed, I hope they find something to help you Hang in there

April 1, 2024
A myPHteam Member

I also did not have side effects with Opsumit I did have lots of side effects with Sildenafil
I have Scleroderma as well Diagnosed in July 2023

March 8, 2024

Related Questions

View All

What causes Pah

A myPHteam Member asked a question 💭
January 15

Scleroderma: Symptoms, Treatments, Pictures, and PAH Link
GLP-1 Drugs and Pulmonary Hypertension: Are They Safe To Take?
You’ve Just Been Diagnosed With Pulmonary Hypertension (PH). Now What?