Six Month Update on Winrevair - First Right Heart Cath
- TWB
- Jun 3
- 2 min read
What happens when an HHT + PAH patient starts Winrevair? Six months later, I finally have data
Six months ago, in December 2025, I started Winrevair. As someone living with HHT-associated pulmonary arterial hypertension (PAH), I wasn’t sure what to expect. I was diagnosed in 2018, and been on the same therapies since diagnosis.
When I heard about Winrevair, I knew I wanted to try it, but there are still a lot of unknowns when it comes to HHT, PAH and this medication. I knew I was stepping into territory where there aren’t many long-term answers yet. But I saw the results in others and knew I wanted to take a chance.
Since I started Winrevair, these past 6 months have a been a journey of ups and downs - I was feeling better, doing more, walking more, traveling more, and living life more fully. But on paper, the progress wasn’t as obvious. My 3 months bubble echo did not have anything definitive pointing in the right direction, just glimmers of progress hidden in some numbers..
I almost let my echocardiogram convince me this was a placebo effect. Despite feeling better and doing more, the numbers weren’t telling the same story.
I’m glad I didn’t let these numbers keep me down. As this week, I had my first right heart catheterization since starting Winrevair. Finally being able to see more concrete data after being on the medicine for sometime.
The results were worth the wait:
One sentence from the report stood out most to me:
“Pre-capillary pulmonary hypertension markedly improved.”
As you can see, progress in the right direction. 8 years of diagnosis and seeing imporvement not like any other Right Heart Cath before. What is even more staggering is that I've gone down 33% on my remdoulin rate while getting these number changes.
I know there has been caution, hesitation, and a lot of unanswered questions surrounding the use of Winrevair in patients with HHT. This post isn’t medical advice, and it’s only one patient’s experience. But numbers like these are why I’m grateful I advocated for myself, and why I’m grateful to have a care team willing to thoughtfully take a chance when there weren’t clear answers.
This isn’t a cure. I still have HHT. I still have PAH. But for the first time since starting Winrevair, I have data showing measurable progress in the right direction.
Feeling better is one thing… but seeing it in a right heart cath is another.
Let’s see what the next six months will bring!
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