Pulmonary Hypertension News Forums Forums Support Groups PH and Co-Existing Conditions Do You Have Both PH and Sarcoidosis?

  • Do You Have Both PH and Sarcoidosis?

    Posted by jen-cueva on October 8, 2020 at 10:56 am

    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.

    Colleen replied 2 years, 2 months ago 4 Members · 6 Replies
  • 6 Replies
  • Lynn

    October 8, 2020 at 1:41 pm

    Also wondering if anyone takes Letaris and Remodulin

  • jen-cueva

    October 9, 2020 at 1:42 pm

    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

    October 9, 2020 at 2:41 pm

    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

    October 9, 2020 at 3:03 pm

    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

    January 2, 2021 at 8:14 pm

    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

    April 21, 2022 at 9:02 pm

    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



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