Orenitram 2018-01-10T17:01:57+00:00

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  • Dawn Reynolds
    Participant
    Post count: 6
    #7736 |

    I have idiopathic PH for 9 years and my pressures were down to 40 but last summer I wasn’t feeling good at all and had a right heart cath and my pressures skyrocketed to 100 so my doctor changed my medicine, Tyvaso, to Orenitram. I have had horrible side effects such as nausea, leg pain, pounding headaches, diarrhea which titrating since end of October 2017 and still titrating, I am up to 1.875 mg but I am still out of breath just walking up a few steps or into a store. Has anyone else felt like this? I had an ECHO last week and pressures are still 100. Wondering if this medicine works at all or should I try something different. My doctor said to get up a little higher to 3 mg and if doesn’t work, try something else. Any suggestions?

  • Patricia
    Participant
    Post count: 32

    I used to be on I.V. Remodulin and did fantastic, but I wanted to get off the pump and use something oral. So, my doctor put me on Uptravi. I am doing very well on Uptravi, but I admit, not as great as on Remodulin. Talk to your doctor about remodulin.

  • Dawn Reynolds
    Participant
    Post count: 6

    Thanks! But that is one thing I am trying to avoid is going on Remodulin. I was on Remodulin when I first left the hospital but got an infection in my line so transferred to Letairis and then added Tyvaso. Unfortunately, the pump is not something that I want to go back on. I’ll try everything else first. If Orenitram does not start to work then I believe she is going to try Uptravi. How are your pressures on Uptravi? and how are the side effects?

  • Autumn Welch
    Participant
    Post count: 9

    I switched from Ventavis to Uptravi. My story is very similar to yours as far as timeline and meds tried. I’m on 1600 micrograms 2 times a day. Titratimg was hard, but not as,bad as I expected. I’ve been at my full dose for 1 month. My side effects are manageable, mostly. I get headaches some and flushing. The only one that is hard is the pain. I feel like someone is pulling my leg off. Sometimes arms and other parts, but mostly in my legs. I see my doctor in February, but my breathing is amazing. I can breathe like I did prior to this crazy illness. I don’t like the pain, but will take it over feeling like I’m suffocating. I no longer have to take water pills and can do things without shortness of breath. Its not very fair that we have to choose breathing or being pain free, but we play the hand we are dealt ☺ My doctor was considering Orenitram but his nurse had done some research and had heard better things about Uptravi. I love just taking 2 pills a day. I love feeling almost “normal” again. Best of luck to you, keep us updated.

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