• Hello to everyone and Happy New Year,

    My mom is in Remodulin subq. I would like to hear from the members who have been in Remodulin at which concentration (1mg, 2.5mg, 5mg, 10mg) and at what dose level have you saw improvement in PH symptoms?
    How long after you started subq treatment?
    Thank you all,
    Vivian

  • Vivian posted a new activity comment 3 months, 3 weeks ago

    Colleen, thank you for your wishes. Mom after 7 days of major pain (she changed infusion site) she feels better today, it takes her approximately 10-12 days for the site pain to disappear …
    Now I m searching the right place to post my question, could you please guide me to that?
    I am not familiar at all I m so sorry.
      • Hi Vivian,
        There are tabs at the top of the site page that say “Home, Forums, About our Forums, etc” Click on the “forums” tab. This tab will bring you to the list of forums. Click on the forum that best fits your question. For example, if it’s about a medication it would go under “Treating PH Forum”. Once you click on the forum title, it…

        [Read more]

    • Vivian posted a new activity comment 3 months, 3 weeks ago

      It s Brittany I m sorry!
      • Vivian posted a new activity comment 3 months, 3 weeks ago

        Hello Britanny!
        Mom is already in klimurtan and revatio and the last year on subq remodulin treatment. It keeps her stable but no the improvement doctor wants to see. She need to increase the dose and we titrate slowly due to side effects. I’ d like to know about how other patients saw improvement with the subq treatment, every patient is…

        [Read more]

      • 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!

      • Vivian posted a new activity comment 3 months, 3 weeks ago

        Colleen, I m so sorry I didn t reply earlier, there were so many stuff going around here. I m starting right now searching for your tag and if someone post sth. Thank you so much for your help, appreciate it.
        • Vivian posted a new activity comment 5 months, 3 weeks ago

          Hello Colleen, thank you for the welcome! It s the first time I register in a forum, I hope I ll get familiar soon.
          I read about your story as a caregiver, you have a brave son, I m sending to your family my best wishes!
          My personal journey started a year ago, when mom had to start treatment with remodulin subq.. Beyond all warnings, it…

          [Read more]

          • Vivian, I’m so glad you found us. I do think you will find the PH forum both informative and supportive. There is no restrictions on topic discussions so please feel free to post whatever you questions and concerns are. I will start a discussion for you about Eisenmerger’s and tag you in it so that you can locate it easily. I don’t have…

            [Read more]

            • Colleen, I m so sorry I didn t reply earlier, there were so many stuff going around here. I m starting right now searching for your tag and if someone post sth. Thank you so much for your help, appreciate it.
          • Vivian posted a new activity comment 5 months, 3 weeks ago

            Brittany thank you, I already found so many familiar topics for me that I have to explore. In Greece there is not sth like that, I ve been searching on my own for further informations right and left, it s not that easy to find a PH patient to discuss about the whole situation. You will excuse my English in advance : ) I hope you doing…

            [Read more]

          • Vivian's profile was updated 5 months, 3 weeks ago

          • Vivian became a registered member 5 months, 3 weeks ago

            • HI Vivian,
              Welcome to the PH forums. I am one of the forum moderators with Colleen Steele. It sounds like you have come to the right place to receive support and words of advice from other caregivers and those of us who are living with PH ourselves. I am so sorry to hear of your mom’s diagnosis of PH due to her heart condition. I was also…

              [Read more]

              • Brittany thank you, I already found so many familiar topics for me that I have to explore. In Greece there is not sth like that, I ve been searching on my own for further informations right and left, it s not that easy to find a PH patient to discuss about the whole situation. You will excuse my English in advance : ) I hope you doing…

                [Read more]

            • Welcome Vivian to the PH Forums! My son wasn’t on remodulin but on IV Flolan. We always had to titrate slowly or else he would be overwhelmed with side effects. Even then he would still have problems but in time his body would adjust. I hope this new treatment helps your mom enjoy a better quality of life. I’m certain that you will receive…

              [Read more]

              • Hello Colleen, thank you for the welcome! It s the first time I register in a forum, I hope I ll get familiar soon.
                I read about your story as a caregiver, you have a brave son, I m sending to your family my best wishes!
                My personal journey started a year ago, when mom had to start treatment with remodulin subq.. Beyond all warnings, it…

                [Read more]

                • Vivian, I’m so glad you found us. I do think you will find the PH forum both informative and supportive. There is no restrictions on topic discussions so please feel free to post whatever you questions and concerns are. I will start a discussion for you about Eisenmerger’s and tag you in it so that you can locate it easily. I don’t have…

                  [Read more]

                  • Colleen, I m so sorry I didn t reply earlier, there were so many stuff going around here. I m starting right now searching for your tag and if someone post sth. Thank you so much for your help, appreciate it.
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