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    • #28906
      Colleen Steele
      Keymaster

      A PF forums member is asking about the drug Treprostinil (inhaled) as a PH medication… have any of you heard of this or have/known anyone with experience with it? He’s referencing this NEJM article: https://www.nejm.org/doi/full/10.1056/NEJMoa2008470

      If there is any information you are able to share Jen and I will pass it on to the PF forum member. Thank you!

    • #28914
      Jen Cueva
      Keymaster

      Thanks, @colleensteele, for sharing this. I know that we had a few mention that they have both PH and ILD.

      The only concern I hear about Tyvaso is scratchy throat and how often they need to do this inhaled treatment throughout the day. I know a few PHriends who stopped it because of the side effects and inconvenience. I am hoping that someone on Tyvaso can help us with some more information.

    • #28920
      Dennis smith
      Participant

      Have been using fir over a year. This drug has given me a jife . On 8 liters continously. Before could not stay on treadmill for more than one or two minutes , now and hour and a half ,.At the end of the four hour sequence I know I need it . No real side effects , without this drug woukd be in home, I am in bed stage and doing well

      • #28924
        Colleen Steele
        Keymaster

        Thank you so much for sharing your experience with Treprostinil @steelcity1. It’s encouraging to hear a positive experience with the treatment. It sounds like it has really lifted you up both physically and emotionally.

    • #28921
      Dennis smith
      Participant

      forgot to mention. I also have ILD COPD Enphysema

    • #28931
      Jen Cueva
      Keymaster

      Thank you so much, @steelcity, for sharing your experience with Tyvaso and ILD. I am happy that this was the best treatment for you. You sound like it helps you in many ways.

      I am happy to share this information if that is OK with someone in the PF community, with ILD and PH. I will wait until you say it is OK.

      I love hearing the positive results from the treatments. Your post makes my heart happy, thank you.

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