Home Forums General Discussion (Public Forum) Switching to Orenitram

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  • Autumn Welch
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    Post count: 5
    #6603 |

    Is anyone on Orenitram? If so, what were your numbers and are they better now? I currently use Ventavis and Adcirca. I have Idiopathic Pulmonary Hypertension. Was diagnosed 8 years ago. I have been fine on Ventavis until the last month. Now considering a switch.

  • Becky Foutz
    Participant
    Post count: 2

    I have been on Orenitram since March of 2016. I also take Letaris & Sildenafil. Orenitram did make my numbers better. However, be prepared, if you do go on this drug, because the side effects can be pretty hard to live with. I have been told that the side effects vary quite a bit from person to person, so it would be worth a try. I myself am considering switching from Orenitram to Uptavi, a slightly different substance, but in the same group as Orenitram. You would do well to do some research and compare the two drugs.

  • Patricia
    Participant
    Post count: 5

    I used I.V. Remodulin since 1999, but was weaned off of it and am now using Uptravi and it seems to be good. I am having a right heart cath tomorrow to see how my pressures. My PH specialist told me that Orenitram is not working that well, that’s why the Uptravi. I have always thought the best educators of this illness are other patients because we are the ones that use the medications, we know what they make us feel, or don’t feel. We know what and how we are feeling.

    • Autumn Welch
      Participant
      Post count: 5

      Thanks! I did research and my doctor also recommended Uptravi. I’m just waiting for insurance approval and all that craziness. What side effects are the worst for you? I have managed side effects of Ventavis pretty well. I also used to have infused Remodulin but couldn’t stand the pain where the pump was inserted. The worst side effect for me from that was the headaches. Please keep us posted on the right heart cath and I agree about patients having the best feedback. Even doctors just don’t understand what we feel. Good luck to you both.

  • Kari
    Participant
    Post count: 2

    Hi there! I have familial PH. My mom had it and my four year old and I got diagnosed a month a part. I started Orenitram in March of this year. I have experienced some side effects like nausea and diarrhea, but they aren’t consistent. The one thing I struggle with every day is the leg pain. It just doesn’t seem to go away so I am on meds to help treat that and also have meds for the nausea and diarrhea if needed. When I was diagnosed my pressures were at 105. I had a right heart cath in December after being on Letairis and Adcirca for 4 months and they were down to 74. I haven’t had a cath yet since starting the Orenitram. Good luck!! I hope you find what works for you. And I have to say as well that I love getting feedback from patients. That’s one thing my doctor and I might struggle with because I’m a crazy (haha) and I research thoroughly every single med that is being prescribed to me and there have been a few I am super reluctant on taking. So I ask patients and when I get an overwhelmingly negative response I tend to not take it (besides my PH meds because I know I absolutely need those) and I think he just wants me to listen to him because he is the doctor. What better input to get than from the people who are actually taking the drug. Take care!

    • Autumn Welch
      Participant
      Post count: 5

      Thankfully, my doctor insist that I communicate with other patients. He thinks that is the best way to find out. How is your 4 year old doing?

    • Kari
      Participant
      Post count: 2

      She is doing very well! Thank you for asking! We take her to The Childern’s Hopsital of Philadelphia and she recently just had a cath where her pressures went down from 65 to 28! We were pretty excited about that. She is on adcirca, letairis, and remodulin. Once she is a bit older we will try to transition her to the Orenitram.

    • Autumn Welch
      Participant
      Post count: 5

      Kari that is awesome happy to hear it!!!!

  • Ashley
    Participant
    Post count: 3

    Hi Autumn,

    I’m Ashley, I have idiopathic PH. A little over a year ago I tried Orenitram, but switched to Remodulin delivered via a central line. There should also be an implantable pump hopefully approved around November 2017. Orenitram does work, and like other people have said here, be prepared for the side effects. The side effects are different for everyone, but if you and have any GI issues it can make you extremely sick. I can say the Remodulin works well. I went from having pressures in the 90s and after a year I am at about 50. Living with a central line can be difficult at times, but Remodulin makes a difference. I went from almost passing out after a short flight of stairs or walking to hiking a mountain for 5 miles a week ago making it to the summit and back.

    • Autumn Welch
      Participant
      Post count: 5

      Wow Ashley that is great!! I used Remodulin initially, through a pump, but it affected my lifestyle so much. At the time, my youngest children were 9 and 10 and I couldn’t even hug them because of pain. My body doesn’t seem to respond well to foreign objects implanted in them. The actual medicine was great except for headaches I had few side effects. The Ventavis was much better and I’ve done that for 7 years now. I just recently had surgery and have been struggling since. My pressures started in the 80’s 7 years ago and are currently in the 50’s. I can do small flights of stairs, like 5 or less, but more is a struggle. I would love to hike. Did you have to stop a lot? Also, since getting sick, I’ve gained 30 pounds which can’t help. My hope is that I can exercise with new meds. I am so impressed with your hike and it gives me hope that I can get there at some point. Thanks for your post!!!

    • Ashley
      Participant
      Post count: 3

      Hi Autumn,

      I didn’t have to stop a lot for the hike and might have stopped 4 times at most on inclines and didn’t have to with declines and flat parts of the hike. Were you using the subcutaneous pump for Remodulin? I’ve heard that causes a lot of site pain. I have a Hickman line for IV Remodulin which has been ok, but I’ve had a similar experience with my body reacting to the adhesive. I’m allergic to all my dressings and the bleach for sterile clothing. That problem will at least be solved with the internal pump.

      After recovering from surgery it will hopefully be easier. My pressures started in the 90s and are now in the 50s like yours. Sometimes it’s getting back into to activities with more cardio that is the hard part. Yoga, pilates, and speed walking is a little easier to start exercising again. It seems like weight gain is not uncommon, I’ve gained some weight since diagnosis 2 years ago and have been working on it since, grad school did not help that. On another post someone made a good point for more effective treatments. Do your treatments work from multiple pathways? Also since the Ventavis is working for you, you could consider another inhaled treatments. Tyvaso is the inhaled form of Remodulin. It can work well, it just depends how medication is depleting in your system. When I was first diagnosed my doctor found that to be the reason I was having a hard time after starting treatment. It was good to hear back from you, hope everything is going well.

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