Sotatercept/Winrevair

[jen-cueva]

Hi @Rivegauche610 , it’s great to check to see what others are experiencing with Sotatercept. Just keep in mind that everyone reacts differently. However, from those who have reported positives with Sotatercept, are doing amazing!

I’ll also tag you in a few other posts where others are sharing some experiences about Sotatercept. But also please do keep us posted if you do start a new treatment.

[Robyn Doyle]

Hello, Sotatercept has not been approved for use in Australia. Is Sotatercept only for newly diagnosed patients?

[jen-cueva]

Hi @Robyn Doyle , no, Sotatercept isn’t only for the newly diagnosed. I know several people in the forums and other Phriends who have transitioned to Sotatercept and are doing well. Has your PH team mentioned this may be a good option for you? I read this information for all of you in Australia, and I suggest you ask your healthcare team(PH) about it.

https://www.tga.gov.au/resources/prescription-medicines-registrations/winrevair-merck-sharp-dohme-australia-pty-ltd
What current treatments are you on now?

tga.gov.au

WINREVAIR (Merck Sharp & Dohme (Australia) Pty Ltd)

Active ingredients: sotatercept.

[hkt]

I’ve been on Sotatercept since last year. I have the 90 mg kit. I really haven’t experienced any bad side effects, that I know of, but I am also on Orenitram, Ambrisenten, and Tadalifil, so my side effects kind of all blur together. I just had a follow up with my pulmonologist and he was pleased with my last right heart cath that we did after I had been on the Sotatercept for a bit.

[jen-cueva]

Hi, @hkt , about how are you feeling since adding Sotatercept to your treatment regimen about a year ago? Were they planning to stop one of your other treatments or keep all four?

It’s wonderful news that you’ve not noticed any new side effects. However, I can relate to having those side effects blur somewhat. They are often difficult to decipher when on multiple treatments. As you mentioned, if we aren’t experiencing new side effects for me and others, that’s a plus! Thanks for sharing your experience.

[hkt]

My breathing has improved somewhat, but I’m still exhausted a lot. But, I also have Hashimoto’s and Fibromyalgia. I still get nauseous, dizzy, etc., but my lung pressures have shown an improvement on my right heart cath after adding the Sotatercept. My other meds will still stay in addition to the Sotatercept, no discussion of changing/getting rid of the other meds.

[Colleen Steele]

@hkt I am all too familiar with the guessing game of which med is causing which side effect. My son was on triple therapy, so if possible, we would titrate one treatment at a time and change or implement one at a time. It sounds like the side effects you might be experiencing are tolerable, which is the best-case scenario. Hey, that is great about the right heart cath improvement!

[tess]

I started Winrevair last July and I haven’t really experienced any of the side effects. I was, and still am, on 3 vasodilators, including IV Remodul.

My pulmonary pressure was 26 prior to beginning. In six months it went to 15!!! I’m currently titrating down on the Remodulin with a goal of discontinuing it completely.

I am at half my dose of Remodulin and have a right heart catheterization planned for next month. If the pressure has gone up my doctor plans to titrate me on oral Remodulin while titrating off the IV.

I’m lucky that I haven’t had a drop in platelets or increased hemoglobin.

I encourage you to try it and pray that it works for you!

Tess Smith

[jen-cueva]

Hi, it’s lovely to see you post in the forums, @Tess . What an incredible update! Others I’ve heard have had experiences similar to yours. Those like you on IV Remodulin must be thrilled, especially once you are weaned totally off the IV.

Hemoglobin and platelet counts are among the most common reasons some have had to back off or stop this treatment. So, that’s another positive for you. 🎉

Do you have a date yet for your RHC next month? We will cheer you on and await great news after that cath. I hope and pray you continue to see positive results with the Winrevair (sotatercept). Thank you so much for sharing your experiences here so others can read and inspire hope.💜

[Colleen Steele]

@Tess Thank you for sharing your encouraging experience! I’ll be anxious to hear the results of your right heart cath! Wishing the best news possible for you!

[Robyn Doyle]

Great news

[John Caraway]

Hi, I’ve been on Winrevair for 4 months now. The only side effects i notice are gum bleeding and I’m aches for several days after the injection. I use the 90 ml kit. I take this in conjunction with IV Remodulin, Ambrisentan, and Tadalafil, compared to 6 months ago when I walked a very short distance it’s working miracles. I’m able to do things again. I have very high pulmonary pressures and was diagnosed in 2012. I thank God and Dr. Habib from the bottom of my heart.🙂🙃🙂

[Colleen Steele]

@John Caraway Thank you for also sharing your encouraging experience! I remember when my son started improving thanks to treatments. Those were very happy and appreciative times. May things keep getting better for you!

[jen-cueva]

Hi @John Caraway , it sounds like you are doing well with adding sotatercept. Does your PH team hope to decrease your IV Remodulin dose as you continue with the sotatercept and other treatments? I”m so happy to hear how well you are doing only a few months after adding it.

Thanks for sharing and keep us posted on how you are doing.

[Rivegauche610]

Thanks for all the replies. My RHC from about 7 months ago was 21, and the cutoff for “having PH” I am told is 20. So I am fortunate, but I still have symptoms and as we all know it doesn’t “get better.” I am hoping to transition off some of the nasal congestion-causing meds like Tadalafil and Ambrisentan but will probably remain on Carvedilol, Eplerenone, Jardiance (not for diabetes but for cardioprotective effects cited by my pulmonologist) and Bumetanide.

I have been using Tyvaso DPI (64 mcg q.i.d) for a couple years now (plus all the other meds listed above) and I am most definitely tired of coughing after every dose, especially since for me it gets worse with each successive one, leading up to a very uncomfortable pre-bedtime experience. It keeps me alive but at a considerable QOL cost. I hope the VA will approve the Sotatercept this time around as it isn’t a “new” drug anymore. But then the VA is always a year or so behind the medications power curve.

[jen-cueva]

Hi, @Rivegauche610. Years ago,I was told the pressure numbers don’t always tell the full story of some with PH. It affects us so differently, and we all have other factors that impact our symptoms.

Hopefully, the VA will approve the Winrevair (sotatercept). I’ve noticed that in the past, the VA has not covered new medications until they have been out for about a year. Keep hopeful and know we are here to support you. We would love to hear when and if you begin using it, and your experience.

[Rivegauche610]

With the considerable burden you bear, I am always grateful for your upbeat and positive comments on so many posts in this forum. Thank you.

[Colleen Steele]

@Rivegauche610 As @jen-cueva mentioned, the side effects and results often vary between patients, but it’s good to ask what others have experienced so you know what to watch out for and what to hope for in taking it. I wish you the best of luck and hope you will update us when/if you start the treatment.