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Can Sotatercept Help Improve Exercise Ability?
New findings suggest that sotatercept added to PH treatments can improve exercise ability. These were the findings of a pivotal Phase 3 clinical trial called STELLAR, which tested the therapy’s safety and efficacy in improving PAH patients’ walking ability.
According to Merck,“statistically significant and clinically meaningful improvement” was noted in the six-minute walk test.
You can read more about this here.
What are your takeaways? Are you interested in asking if sotracept would benefit you or your loved one?
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28 Replies
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Has anyone heard of this treatment? I want to hear what you know and if your PH teams are discussing new treatment options.
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This drug was mentioned at my sister’s last cardiology appointment, and her cardiologist was very excited about it. I have a RHC next week, and will talk to my cardiologist about it next week.
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Hi @sarahbeth31819, did your sister’s cardiologist mention if this may be an option for your sister? Good luck with your RHC; which day are you going? Please let us know how we can best support you.
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The phase 3 trial data looks so promising for all who can take this drug. It should be out early 2024. It should be a block buster hopefully as Flolan was the first hope back early 1990s…. No data on CTEPH form of PH only PAH!
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Yep, I’ve heard of sotatercept – I participated, albeit briefly, in a blind trial mid-2019. Almost immediately I knew I was getting the drug and not a placebo. It affected my kidneys although I was told this would not have been the drug. As soon as I realised what the symptoms and pains were indicating, along with my eGFR numbers heading downwards, I pulled out of the trial. I’m quite sensitive to a lot of drugs so am aware of what’s happening to my body. I was really crook. Worryingly, it took me several months to recover normal body functions and taste and eating patterns. At my step-daughter’s wedding I could only eat cake so had to sneak several pieces more than my share ! Everything else tasted awful and upset my stomach. All’s well now.
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@auntlizzie yet another good example of the importance of self-advocacy. I wonder how long they would have allowed you to continue before doing the right thing and pulling you out of the trial? Thank God you are self-aware and I’m glad to hear that all is well now.
Have you or would you do a trial for something else after that experience?
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Oh wow, @auntlizzie, I’m sorry that you had a negative effect from taking Sotatercept. I’m grateful that you are doing better now. Kidney disease is no fun; so thankful that your body is improving.
What’s wrong with only eating wedding cake? Hehe. I know, that’s not much nutrition and no fun when you need the nutritional intake from various foods. How is cake tasting for you now? Are your tastebuds back to your norm now?
That’s unfortunate; thanks for sharing the update. I hope you have a great month!
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Thanks Girls for your concerns. I am fine now, but I was pressured a little bit to stay in the trial, but I’d made up my mind, even before the trial began that I would pull out at the first sign something was not working for me. Cake? Always a good choice, in fact I had one today at a local government planning meeting. A choc cupcake with the most outrageous dark pink creamy stuff on top – Yum!
I accept that my experience with this drug may have just been my system saying no that’s no good for me, and others might find it OK, but no, I would not participate in another trial, unless I was dying and any outcome would not matter to me – Did I say that??? Cheers
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Hi @cdvol3gmail-com, I wanted to tag you here. Before we moved, I also heard a talk about the positive results of sotatercept at a PH support group in Houston. The research nurses at the Houston PH Center also thought the benefits of this new treatment would be a favorable option for many of us in the PH community.
Incredibly, doctors are talking about newer treatment options. Here’s a more recent article that PH News did in March. Check out the link below.
Sotatercept plus PAH therapy improves walking abilities: STELLAR -
Hi, cannot believe I missed this article. I was told about it by my Pulmonologist and saw anbarticle in The New England Medical Journal.
For folks on subQ and the IV Hickman line, this could really be a game changer plus sny PH patients on orals trying to balance th we sude effects. Of course these meds have their own side effects that may not work for some.
Thanks for all your information.
Love and hugs!!!!
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Hi @cdvol3gmail-com, no worries; I wanted to let you know us at PH News will be zoned in, awaiting the updates from the FDA on this one.
Yes, this treatment could benefit others when added to orals or others transition to it. Thanks for the reminder that, like all medications, it, too, will come with side effects.
I wouldn’t mind this treatment if my PH team suggested adding it to my treatment plan. My doctor did order another Echo once I am fully recovered, so probably next month.
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It really be great if this could work for me – get rid of the IV. go swimming and sailing again.
I am sending you positive vibes that you will be well enough next month to have an echo and the echo show improvement!! Please keep us posted good friend. Big HUG.
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Oh, @cdvol3gmail-com, what an extraordinary vision of you sailing and swimming again! That would be incredible and exciting for you to look forward to early next year.
Can you believe we are almost halfway through 2022? Unbelievable! I’ll be crossing all I can and praying this is an option for you, my sweet PHriend.
Thanks for your encouraging words for my Echo next month. I’ll certainly keep y’all posted.
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Hi @cdvol3gmail-com, and others, I asked my PH specialist, Dr.Channick, yesterday about his thoughts on sotatercept, and he said this sounds promising. He did mention; we won’t know the side effects as it’s too new and early.
But he did say if I needed something else in the future, we would discuss this as a potential treatment once it’s available.
I’m always curious because I read up on possible therapies for treating PH. An injection every 21 days would be incredible for those like you, Carol, and others with pumps that limit your activities.
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Hi @kygon, I thought I’d tag you to give you a heads up on some comments regarding the new PH treatment in case you’re interested. My doctor has high hopes for it, even with severe cases.
Sending love, hugs, and extra prayers and light your way as Bryan gradually increases his Uptravi. ❤️
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My PH case is relatively mild, but my pulmonologist will prescribe Sotatercept once available. I currently use Adempas and Tyvaso DPI (and it is a bit annoying – coughing after each inhalation, one every four hours 9-9) plus Carvedilol, Bumetanide, Eplerenone and Jardiance (for cardioprotective features, not for glucose control). Yeah, I urinate a lot. I beat lymphoma (“cured”) last year and I have begun exercise more regularly to hopefully turn things around. Sotatercept sounds to me like a cure for certain kinds of PH.
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Hi @Kevin Smith. I hope that you can start Sotarcept and that it offers you relief. Is your PH team planning to stop the Tyvaso after you begin this treatment? It sounds promising. Do you know a time frame, or has your doctor mentioned when this may be available for you?
Yes, everyone I know who has experiencve with Tyvaso complains of that nagging cough. Have you tried taking a cough suppresenat to help? I’ve heard some do. Be sure to check with your PH team.
Yes, this is an exciting new treatment and I’m looking forward to seeing how well it helps the PH community.
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The cough only lasts for maybe 30 minutes, starts with a lot then it is quite intermittent in that time. It is only annoying. He has mentioned trying Sotatercept alone (although I imagine I will have to keep some form of diuretic, alas). Time will tell. He said early 2024.
Benzonatate is the only cough suppressant that really works in any way. It was helpful at the beginning of the Tyvaso DPI but I no longer use it.
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Hi, @Kevin Smith, that’s good news that the nagging cough is not constant! Benzonate is what I have for cough when I get bronchitis. It usually makes me drowsy so I hate to take it during the day unless I can do nothing. Do you tend to do this, too with any meds?
Oh, I’m most certin you will keep the diurteucs. That’s cool if you can only be on the soptracept and stopped the others. I misundertood your earlier post. Since this is an injection needed every 3 weeks,. I wonder if this is something we will be doing ourselves or if we have to gio in and have the PH nurse inject it. It’s a subcutaneous injection. Did your doctor say either way?
I do my own B12 injections intramuscular each month.
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My doctor at Brigham and Women’s is quite enthusiastic about it. She says it is exciting that it targets a new pathway. Also, our support group had a participant in the trials come and talk to us. She was on the drug and it had dramatically improved her PAH. We’ll see how it goes next year, I guess.
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Wow, @Jane Armstrong, so thrilled that your team is also excited about this one. My PH team also was impressed so far with this treatment. It could possibly be what we all need and would eliminate the oral pills, minus the diuretics and others.
It’s also promising that you had a SG member share her positive experience with the clinical trial. We keep PHighting for a cure and hold on to our good days. Thanks so much for sharing, Jane.
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My Pulmonologist is also very excited about Sotatercept. He mentioned that after 2-3 months patients may be able to inject themselves at home!
One major concern. I read about Medicare suddenly dropping their coverage ( Part B) for another self injectional medication for patients who had a different chronic disease because it cost too much $100,000/year. Well our PH meds cost that much +. I just hope those of us on Medicare and suppliment insurance will still be able to get Sotatercept. If Medicare will not cover it there is no way we would be able to afford it on top of all the other medications.
Keep your fingers crossed!
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@Carol Volckmann , it just breaks my heart and infuriates my mind when I hear about patients stressing over having lost or possibly losing critical medications due to insurance. I know we had to battle for one post-transplant prescription for Cullen. Luckily that worked itself out but I worry over the future and what insurance brick walls we might hit.
I’m going to be praying it all works out for you! Please update us as you move forward!
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Oh no, @Carol Volckmann, that would be horrible if Medicare dropped one’s coverage! This is especially heartwrenching when a treatment is considered life-saving, like with PH. One would think this would make a difference, but who knows in the current world?
All we can do is hope and pray that this doesn’t happen to us and our loved ones. No one should have to endure being dropped by their medical coverage.
I’m working on a future column about upcoming treatments and advances in PH. He mentioned that his clinical trial patients were self-injecting sotatercept quickly without any issues. Once this piece is published, I’ll be happy to share it. There’s so much on the horizon that we should be excited about!
Carol, please keep us posted if you hear any updated news on this possible new option. Cheers to a great new week ahead, my dear PHriend!💜
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Hi Colleen and Jen, I have an appointment this afternoon with my Pulmonologist and for sure I will be asking him about this.
It is so infuriating so exhausting so inhumane! We take one leap forward: no life time limits, no pre-existing conditions then … 2 steps back as insurance costs increase and coverage decrease. Makes me so angry. I will keep you posted as I learn more.
Sending positive thoughts with love and hugs.
Colleen, how are you doing with organizing your move East this coming month! You must be exhausted emotionally as well as physically. I do hope you are taking time to rest!
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Hi, @Carol Volckmann, yes, ma’am, it’s so challenging and frustrating to know that this is the reality we could all face. We already continue to pay higher premiums as our coverage decreases, it seems yearly. When managing multiple chronic conditions, we have enough on our plates.
Please do keep us posted. Crossing all I can and sending positive thoughts and pray,er my dear PHriend. – Hugs
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Sotatercept – just finished my appointment with my Pulmonologist who met with Merck yesterday. They are ready. It still needs the FDA final and Merck is hoping any day now. But … we all know how the FDA works! Everyone in the PH world is still very excited/optimistic about Sotatercept so we wait……..
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Hi @Carol Volckmann, thank you for sharing the update from your pulmonologist about sotatercept. It sounds like a promising treatment for many. I know the plan was early 2024. But maybe the FDA will get moving and approve it before the end of this year.
Is he planning to try and transition you, Carol? If so, that would be a blessing after all these years, my dear PHriend. How was your appointment? Anything new you want to share besides this new treatment excitement?
Thanks for sharing again. Many will hopefully benefit from this treatment. Enjoy your evening, sweet lady.
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