-
does tyvaso imrove IPF or slow decline?
I noted today new findings on tyvaso— the author (Marisa Wexler, 9/3/25) notes that the study found tyvaso improves PFT— but later notes that persons on tyvaso did better than those on placebo. So it’s ambiguous— does tyvaso imrpove pfts or just slow down the rate of decline. I am on tyvaso (because I also have pulmonary hypertension) but haven’t really noticed much benefit—- just an increase in my cough and I was thinking of stopping it— but if it improves pft I might continue. Any thoughts?
-
3 Replies
-
Peter-Franks
I didn’t realize Tyvaso was on market. What dose are you on? Does Medicare cover any of the expense?
Are you on any other approved drugs for IPF? I have had IPF for over 10 years but kind of on the end of line pulmonologist put me in palliative care next step hospice. I have been on OFEV since 2016 and hoping for a miracle drug to appear. Sorry I wasn’t able to help good luck.
-
Hi Peter,
My husband has interstitial lung disease. He had an echo for his heart and one of the results
suggested Pulmonary Hypertension. The doctors are not concerned, but I am. Can you tell me
a little about how you found out you had it? Did you have to have a right heart cath before they
prescribed the Tyvaso and is it helping your lungs or showing any improvement or no worsening of
the pulmonary hypertension? Thank you and we wish you well., Kathy & Andy
-
I participated in the Tyvaso Teton 2 clinical trial a couple years ago. I may have had a placebo or Tyvaso in this blind study. It required 4 nebulae treatments per day. Which was onerous. After two months I dropped out because of a side effect. I was on Esbriet at the time so I quit both the trial and Esbreit and that stopped the side effect (skin rash). A month later I began OFEV only and have been doing okay since then.
So my comment on Tyvaso is that during the clinical trial after the nebulizer treatment I could breathe easier and felt better. This was my subjective opinion without objective data.
If I was on Tyvaso, it was improving my IPF. If it was a placebo, it was in my head that I felt better.
If Tyvaso becomes available for my IPF, I will request it since I’m on OFE now.
Log in to reply.