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Inhaled Treprostinil in Pulmonary Hypertension Due to Interstitial Lung Disease
A PF forums member is asking about the drug Treprostinil (inhaled) as a PH medication… have any of you heard of this or have/known anyone with experience with it? He’s referencing this NEJM article: https://www.nejm.org/doi/full/10.1056/NEJMoa2008470
If there is any information you are able to share Jen and I will pass it on to the PF forum member. Thank you!
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5 Replies
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Thanks, @colleensteele, for sharing this. I know that we had a few mention that they have both PH and ILD.
The only concern I hear about Tyvaso is scratchy throat and how often they need to do this inhaled treatment throughout the day. I know a few PHriends who stopped it because of the side effects and inconvenience. I am hoping that someone on Tyvaso can help us with some more information.
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Have been using fir over a year. This drug has given me a jife . On 8 liters continously. Before could not stay on treadmill for more than one or two minutes , now and hour and a half ,.At the end of the four hour sequence I know I need it . No real side effects , without this drug woukd be in home, I am in bed stage and doing well
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Thank you so much for sharing your experience with Treprostinil @steelcity1. It’s encouraging to hear a positive experience with the treatment. It sounds like it has really lifted you up both physically and emotionally.
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forgot to mention. I also have ILD COPD Enphysema
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Thank you so much, @steelcity, for sharing your experience with Tyvaso and ILD. I am happy that this was the best treatment for you. You sound like it helps you in many ways.
I am happy to share this information if that is OK with someone in the PF community, with ILD and PH. I will wait until you say it is OK.
I love hearing the positive results from the treatments. Your post makes my heart happy, thank you.
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