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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?
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10 Replies
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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.
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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
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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.
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Hi Terry
Were the 4 treatments for Tyvaso spread out over the day and night?
Do you remember the dosage you were on?
Thanks
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Here is a link to the column Marisa Wexler wrote on Tyvaso (9/3/2025).
https://pulmonaryfibrosisnews.com/news/tyvaso-boosts-lung-function-ipf-trial-per-top-line-data/
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I have been on Tyvaso since May
I honestly wish I could say it has helped me a lot but I can’t say that I’m breathing any better than I was before. I have pulmonary hypertension but I also have IPF.. my ipf has been stable for a long time and I would not consider Ofev due to side effects.
I started Tyvaso for Pulmonary hypertension. It was confirmed with a right heart cath. I have was diagnosed with IPF about 18 months ago.
Nebulizer treatments help but I work.fulltime from home and the Tyvaso 4 times a day drives me crazy and reg meds 3 times a day and then.trying to remember to squeeze in 4 to 6 Nebulizer treatments too…arrgghh! Its a blessing no side effects but sure hope things improve soon!!
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thanks for your replies
i am on tyvaso (DPI) for 1 year, covered by my insurance— they required a RHC to document my pulmonary hypertension (they would not accept the echo results— i suppose too inaccurate)— i am on the maxiumum DPI dose (64 mcg)— which is sightly lower than the maximum nebulizer dose (which the insruance won’t cover). Anyway, it’s hard to notice any benefit– my PF progresses (i am also on esbriet) but i suppose it could have progressed faster without the Tyvaso. The tyvaso is a nuisance -has to be taken every 4 hours, 4 times/day— so there is window at night (8hours) when i have no medication on board ( this doesn’t make sense to me!!)—- it makes me cough and is an intrusuve ritual. If it were helping (actually improving things) then i might think the hassle was worth the effort— but at this point, simply slowing down progression (possibly) doesn’t seem worth the hassle— quality of life is not improved for me
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I share peter-franks opinion of the article by Marisa Wexlet as being “ambiguous”.
Google tells me “TYVASO (treprostinil) Inhalation Solution and TYVASO DPI (treprostinil) Inhalation Powder are prescription medicines used in adults to treat Pulmonary arterial hypertension (PAH; WHO Group 1), which is high blood pressure in the arteries of your lungs.”
Google AI tells me “The single best pulmonary function test (PFT) measurement for identifying and assessing pulmonary hypertension (PH) is the diffusion capacity of the lungs for carbon monoxide (DLCO). A reduced DLCO is the most consistently found abnormality in PH patients who do not have accompanying lung disease.”
The year-long TETON2 study at https://clinicaltrials.gov/study/NCT05255991 has resulted in touting the 95.6 mL increase in FVC as a big deal for IPF? Why? Is it a positive result in one parameter looking for a home elsewhere? FVC is measured in liters, and 0.0956 is a pretty small number to call a “significant improvement”, and this kind of hyperbole implies that DLCO did not change or even fell.
Ofev and Espriet slow the rate of decline in both FVC and DLCO, but if Tyvalo only benefits FVC it may not be much help to anyone who needs DLCO improvement in PH, IPF or ILD.
terry-bass tempered my negative take when he noted that he “could breathe easier and felt better”, though he does not know whether that was Tyvalon or the placebo.
ILD and IPF are restrictive diseases, and the two most important measurements are FVC and DLCO. Their %Predictive reflects progression, and a few of us with ILD share PFT results. We have noticed that those of us with High FVC/Low DLCO %Predictives need more oxygen and suffer worse dyspnea than those who have Low FVC/High DLCO %Predictives. Our non-medical assessment is that FVC is less important to our health than DLCO.
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@jai – Thanks for the insight. Caused me to reach out to my Pulm Doc for accurate info on PAH, DLCO and FVC.
Stay well…
Steve -
Thank you for this initial inquiry and the replies.
i have been prescribed Tyvaso. I do have IPF and PHT. We are having fits with the insurance (Medicare, and BCBS in the USA) getting “certified” for this medicine.
Also, I just joined a survey/study at our local research hospital for Tyvaso.
thank you, again, for the very informative posts. Your information sharing is enlightening in my journey.
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