Do You Have Both PH and Sarcoidosis?

[Jen Cueva]

We have a new forum member, Lynn, @saksfifth44, who wants to know if anyone has PH and Sarcoidosis. If you have both PH and sarcoidosis, please share your experience with her. I am certain that having both affecting your lungs must be challenging to manage.

For those who want to learn more about sarcoidosis, check this link.

If you have both, were you diagnosed with PH or sarcoidosis first? We want to hear from you.

[Lynn]

Also wondering if anyone takes Letaris and Remodulin

[Jen Cueva]

Yes, thanks for adding that @saksfifth44. My apologies as I did not add that to the post. I am hopeful that anyone on Letairs and Remodulin will share their experiences. As I mentioned, I have only taken Letairs with other medications.

How are you doing today? Did you speak with your doctor about the increased shortness of breath?

[Lynn]

I started the Letaris and my doctor took me off it because I got severe swelling.
He said frequently happens when you take Letaris and other vasodilators

[Jen Cueva]

Yes, that is why I stopped Letairis, too. I had an increase in swelling. Are you having any improvements with your shortness of breath?

[Becca m]

They are 95% sure I have sarcoidosis and I also have pulmonary hypertension but I do not know yet if they are related. Whatever you do, do not google sarcoidosis related pulmonary hypertension! The internet will only tell you you’ll die soon.

[Colleen Steele]

I received an email from the PH Association today about April being Sarcoidosis Awareness Month. They offered a lot of information and resources that I thought might be helpful. Click on the links below.

Sarcoidosis Awareness Month 

Free Brochure

And the following is information many of our members might find helpful. It is about…

Controlling Salt and Sodium

 

 

• This reply was modified 2 months, 1 week ago by Colleen Steele.

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