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I was diagnosed PAH and being screened for scleroderma. I’m waiting to see a specialist to get more info. Mostly I’m scared and uncertain.

A myPHteam Member asked a question 💭
Flushing, MI
March 20
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A myPHteam Member

Hi Gail in 2016, I was diagnosed with scleroderma and in 2022 severe PAH. For scleroderma i am on mycophenolate and Hydroxychloquine and for PAH i am on triple therapy, sildenafil, opsumit and uptravi. I was on the injection winrevair but my Dr took me off because I have telangiectasia in my stomach caused from scleroderma and that caused a bleed. When I see my Dr in June he is talking about a 4th med. It is scary at dirst but the right treatment it helps and you can have a somewhat normal life. God bless!

March 20
myPHteam

How can you manage the fear and uncertainty while waiting to see a specialist after being diagnosed with PAH and screened for scleroderma?

It's completely understandable to feel scared and uncertain right now. Waiting for answers can be one of the hardest parts of this journey.

First, know that seeing a specialist is an Show Full Answer

How can you manage the fear and uncertainty while waiting to see a specialist after being diagnosed with PAH and screened for scleroderma?

It's completely understandable to feel scared and uncertain right now. Waiting for answers can be one of the hardest parts of this journey.

First, know that seeing a specialist is an important step. PAH specialists have the expertise to properly diagnose and manage your condition, which can make a real difference in your treatment and outcomes.

While you wait, here are some things that might help:

- Keep a journal of your symptoms and when they occur, so you can discuss them thoroughly with your specialist
- Write down questions as they come to you, so you don't forget them at your appointment
- Try to take things one day at a time - this is a mantra many people with PAH find helpful
- Remember that early detection of PAH, especially in people being screened for scleroderma, can lead to better treatment options

A myPHteam member shared: "While I certainly feel discouraged with my newest diagnosis, I am relieved to have something that confirms all of my heart and lung symptoms."

The uncertainty is hard, but getting proper care from a specialist who understands both PAH and potential connective tissue diseases will help you move forward with a clear treatment plan.

March 20

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Destin, FL
November 19, 2020

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