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    • #15716
      Brittany Foster
      Keymaster

      Recently, one of our forum members @ripple76 mentioned his treatment, Remodulin. I know that this therapy can be difficult for many and I have heard of the exhausting side effects. I also know that this medication can help with PH symptoms and does have many benefits.

      Our member writes about his experience with Remodulin and states, “titration seems to cause me problems but it is getting better. I had to slow down on Remodulin. Does anyone have some really positive effects from Reodulin? I’m looking for encouragement.”

      Can you share your positive experiences with this medication and any benefits from it that you had? Let’s show some encouragement to support him through his treatment.

    • #15750
      Joanne Sperando
      Participant

      I’ve been on subcutaneous Remodulin for 20 years. i started out in the clinical trials when it was either, IV Flolan, or trial drug subQ Remodulin. there’s no denying that the combo of Remodulin, 2 other PH drugs and seeing one of the best PH docs in NY has led to my long survival. Although subQ Remodulin can be very trying (and have awful side effects, like gut issues), I know it’s helped me in the long run.

      • #15751
        Brittany Foster
        Keymaster

        Joanne,
        Thank you for the encouraging words. I know that with many medications the benefits outway some of the other side effects that you may get from them! Sometimes it’s like trading one condition for another, especially when it comes to the impact on the GI system. But in your case, seeing pulmonary improvement must make it all worth it !

    • #15758
      Graydon Cawein
      Participant

      Good morning, I don’t know how long you’ve been on Remodulin. I’ve been on IV Remodulin for 9 years.
      I am also taking Silldenafil & Letairis.
      In the beginning & during the time of titration it was difficult.All the usual side effects.
      All I can say is give it some time. When I was first diagnosed I could not go up a flight of stairs without
      stopping 2 or 3 times to catch my breath. Now I go up 2 flights before I have to slow down & catch my breath.
      All other physical activity has greatly improved. All the side effects have subsided a lot. They never really went away completely. But they are not as severe or as frequent as they were. Like I said give it some time.
      I truly believe that I would no longer be alive, were it not for Remodulin.

      Hope this helps a little bit. Have a great day.

      • #15761
        Brittany Foster
        Keymaster

        Graydon,
        Those are definitely great words of encouragement! It seems like a lot of our members are on a combination of therapies and treatments that work together to help with the PH. I know titration must be so difficult but it certainly helps to hear feedback like yours knowing that there are hopes of the positive benefits once the side effects start to become more tolerable. Thank you so much for the encouraging post.

    • #15760
      Michael
      Participant

      Brittany for @ripple76,

      I have been on Remodulin for 7 years in all of it’s forms. SubQ, Inhaled, and currently IV delivered via Hickman port. I am also taking Revatio and Opsumit. Similar to Graydon, I could not walk up a single flight of stairs without feeling like I would pass out right before starting the infused Remodulin. Since moving to infused Remodulin, and hitting my titration to 40ng/kg/min, my quality of life is vastly improved! I work out 3 times per week, and walk my dog as often as possible. I travel and enjoy my grandchildren. I’m looking forward to having the Remodulin pump and tubing implanted this year for greater QOL and freedom. The titration up takes time, but the side affects have been manageable. This is the best PAH treatment I have had!

      • #15762
        Brittany Foster
        Keymaster

        That is such amazing news Michael and I’m so glad to hear of your positive experiences with this medication. I really hope that you continue to see improvement with new implanted pump. It must be great for you to take part in all these medical advances ! I’m so glad you are enjoying your time with your dog and are staying as active as you can be. I know that having children in your life definitely adds to the activity that you want to be able to do to keep up with them! Thank you for your encouraging response!

    • #15778
      Steve Stiffelman
      Participant

      Hello all,
      I have been taking SubQ remodeling for just over a year. I wish that I could tell you that all is great. I experience a lot of pain from site changes. I am very thin from my 14 year battle with scleroderma. I have very few options for changing sites. Aside from all of this, my short journey with this medicine has been amazing. Before remodulen, I was taking Lataris and Adcirca for a couple of years. Without any warning the medicine stopped working. I am now taking all 3 of those medicine. So far, the results are amazing. I just recently climbed 60 steps easily. My last heart cath showed significant improvement in my pressures in my lungs and heart. I am traveling and working out very lightly. Stay with this medicine. I am sure that it has saved my life.

      • #15779
        Kathleen Sheffer
        Participant

        Thank you so much for sharing about your experience, Steve. I have heard that site pain can be unbearable with SubQ Remodulin. I had a broviac catheter for the 8 years I was on Remodulin (and 8 years on Flolan before that). I didn’t have any site pain, but did have a few infections and had to get the catheter replaced several times over the course of 16 years. There are drawbacks to a central line, but if the medication is helping your pressures, you might consider this option. I am sure it saved my life, too – thank you for saying so.

    • #15792
      Randolph Reynolds
      Participant

      Thank you Joanne, Graydon, Michael and Kathleen. Special thanks for Brittany’s mentoring this site. I have reached the level of 43 ng/kg/min but was advised to back down and go slower. There are certain very uncomfortable side affects usually they occur after I refill the pump. Site pain with a new site is awful. However, I am encouraged that overall the Remodulin is improving things for you. My last heart cath indicated that was starting to happen. There are days when I seem to have muscle aches that i can only attribute to the medication. Sleeping is often hard.
      Having said all that what you have indicated to me is that this medication extends life. I can do more than just a few months ago but I have to be slow and careful. I was getting very discouraged – perhaps depressed is a better word – over this situation. A side affect that I had not expected was the limitations on visiting friends. I’m hoping that I will reach a point in titration when I can be more confident about getting around. Psychologically speaking there is also concern for me about incontinence since I had my prostrate removed.

      ]Bless you all in your on going battle. Thanks for the positive response.

      • #15798
        Brittany Foster
        Keymaster

        Hi Randolph,
        I’m so glad that many of our members’ stories are so encouraging for you to hear. I know that it must be tough with the titration and sometimes it’s harder to see the bigger picture when days are difficult. I know that my judgement gets clouded when I am in physical discomfort and pain. It’s hard to see the progress that you’re making when your focus is on such a big goal that we all have of feeling better and getting our independence back. It’s good to think about the small ways that you have improved since starting it and find some encouragement in knowing that you are making steps in the right direction, even though those steps might seem small right now. Turtle steps MATTER and ARE just as IMPORTANT in getting towards that final goal ! I have faith you will get there.

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