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Are you treating your PH with Winrevair (sotatercept) or with a prostacyclin?
What is your experience with Winrevair (sotatercept) or prostacyclin therapy, such as Remodulin or Flolan? If you have been treated with both, what differences did you notice when you switched from one to the other?
Take a moment to read “Winrevair, prostacyclin therapies work differently to improve PAH outcomes,” by Lindsey Shapiro, PhD. It discusses a new study finding that Winrevair and prostacyclin therapy have different effects on blood flow.
“When people with this rare type of pulmonary hypertension started prostacyclin treatment, resistance to blood flow in the lungs fell, and the heart pumped out more blood. After Winrevair was added, pressure in the lungs continued to fall without substantially increasing the heart’s pumping output, data showed.”
How would you compare the two treatments?
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11 Replies
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I currently take Letairis, Tadalafil, Spironolactone and have been for 12 years. My doctor decided to add Winrevair to my regiment because I had been feeling more short of breath, and fatigue I could not shake, plus the usual PH symptoms. My RHC also showed my PA pressures were at 57mmHG.
I am hopeful my PA pressures have declined. I do not get as short of breath and my activity has definitely increased as I don’t feel as fatigued. Hopefully, I am not experiencing the so called Placebo effect.
have been on Winrevair for a full year this month. I have my first RHC since I started Winrevair this coming Wednesday. I will share the findings I receive. I also have an echo and 6MW the day before and of course bloodwork.
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The Winrevair imust be working! My PA pressures from February 2025 were 57mmHg. I Started on Winrevair June 2025 and my PA pressures are down to 28. We cut my diuretics to half of what I was taking. I feel much better than I did this time last year. That is definitely a plus!
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@cindy-bee That is fantastic news! I am so happy for you! Has this improvement increased your ability to be more active and if so, what have you been up to? Love hearing from you!
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@Debby I’m sharing your update here and hope others on Winrevair will share their experience with you.
Began with Tadalafil 5 years ago when diagnosed with PAH. (Previously I was being treated for heart disease having had a stent, valve replacement, and pacemaker.)Currently am taking Opsinvy, Spironolactone, but also Eliquis and Furosemide for heart. My pulmonologist wants to start me on Winrevair. Diagnosed WHO I. I really don’t want to try it but I will. How have others done with this drug?
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Taking one day at a time. Feeling blessed to be seen out and about. Grandkids get most of my attention. I truly don’t have any reason to complain. I know that PH can dramatically affect my health at the drop of a hat, so, I try and keep a positive outlook. It isn’t always easy, but worth it!
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I’ve been taking Winrevair for about 6 months after taking Remodulin for 8 years. The only difference I can tell is that about a week before my shot is due, my breathing is a little more difficult. Otherwise, it’s working well for me. I am also taking Adempas.
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@Jennifer Beaty thank you! It helps others when we share our experiences. 🙂
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Winrevair is a game changer. My therapies initially were ambrisentan and tadafil. On Winreair (also called Sotatercept) since July 2024. My original number for pulmonary pressure was 62. Recent test shows I am in a very normal range at 22 ! I had an intermittent test 6 months ago – I was at 32. This medication works to bring the pressures down and it is hopeful to change the remodeling that has occured in the vessels. To be determined. I can say I never had a symptom of PAH even at 62 pressure. So if asked do I feel better I answer I feel fine and always have. I have extremely odd saturation readings from the finger pulse ox. They have not been able to explain that. Dipping and diving. I have no symptoms no shortness of breath.
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Debi,
I am on the exact same medication as you are. Have your doctors said anything about cardiac output since you started Winrevair?
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Good question! @Debi How has your cardiac input been?
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@Debi If you are going to be unique, not having symptoms is a wonderful way to be unique! Thank you so much for sharing your experience!
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