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    • #27628
      Jen Cueva
      Keymaster

      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.

    • #27631
      Lynn
      Participant

      Also wondering if anyone takes Letaris and Remodulin

    • #27655
      Jen Cueva
      Keymaster

      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?

    • #27664
      Lynn
      Participant

      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

    • #27668
      Jen Cueva
      Keymaster

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

    • #28506
      Becca m
      Participant

      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.

    • #34077
      Colleen Steele
      Keymaster

      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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