Research & Development

[Jen Cueva]

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?

[Jen Cueva]

Has anyone heard of this treatment? I want to hear what you know and if your PH teams are discussing new treatment options.

[Sarah Beth Shingler]

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.

 

[Jen Cueva]

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.

[Aunt Lizzie]

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.

[Colleen Steele]

@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?

[Jen Cueva]

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!

[Aunt Lizzie]

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

[Jen Cueva]

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

[Carol Volckmann]

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!!!!

[Jen Cueva]

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.

[Carol Volckmann]

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.

[Jen Cueva]

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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