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    • #20852
      Colleen Steele
      Keymaster

      Welcome @vivianliakouli to the PH Forums.

      Vivian would like to know if any other patients with Eisenmenger’s syndrome (Or other congenital heart disease) who are on Remodulin Subq. Please share your experience with side effects from the treatments and pro bnp factor.

    • #20863
      Jen Cueva
      Moderator

      Welcome, Vivian,
      I do not have Eisenmenger’s Syndrome, but I do know a PH friend who does. Unfortunately, she’s not on SubQ Remodulin. She’s on oral meds. If you like I can connect you with her if no one here can help.

    • #21242
      Colleen Schnell
      Participant

      Hi there,
      I have Eisenmenger’s Syndrome, but I am on Tracleer and Revatio. I’ve been on them since 2003 and 2007, respectively. I’m sorry I can’t help with the Subq part, but if Vivian ever wants to chat, please let her know I’m willing to talk! 🙂

      • #21245
        Jen Cueva
        Moderator

        Thanks Loca, I was not sure if it mentioned this to you or not. But, either way, I am happy that you found it. Welcome, Colleen.

      • #21258
        Colleen Steele
        Keymaster

        This is what the forums are all about! Thank you @colleen-schnell for offering to chat with @vivianliakouli.

        • #21272
          Jen Cueva
          Moderator

          Exactly, @colleensteele. I am happy that Colleen Schnell popped in. I hope that she will join us more often. She has some great tips and a life-long experience to share. Plus, she is amazing, too. She happens to be one of my longest PH friends.

      • #21998
        Vivian
        Participant

        Hello to everyone, thank you all for your interest, mom is already in klimurtan(bosentan) and revatio.
        I guess I have to get informations just for Subq remodulin part. Hope you all doing well, take care!

        • This reply was modified 8 months ago by Vivian.
        • #22006
          Brittany Foster
          Keymaster

          Hi Vivian!
          Hoping for the best for your mom. Are doctors currently discussing the subq treatment plan for her? I know you will get good support here if she is going to go through that for her next steps. There are many members who have been or are currently on that. Personal experience is always the best part about these forums!

        • #22012
          Colleen Steele
          Keymaster

          Vivian,
          My son did well on triple therapy for a long time. He was also on bosentan and revatio. He wasn’t on subq remoduilin but on IV Flolan. He did well for a long time on these therapies. I am wishing the best for you mom. Update us when you can on how she is doing.

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