Does Camzyos reduce thickening of the heart or manage symptoms?

Posted by haasil @haasil, Jul 16, 2024

I have been advised to take Camzyos but can't find any information regarding whether or not this medication actually reduces the thickening of the heart or just for symptoms. Anyone know?

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Thanks for the explanation.

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The black box warning is regarding the risk of congestive heart failure (CHF). That is why they require repeat echos frequently when you start to be sure your ejection fraction (EF) stays at an acceptable level (usually > 55% but that number may vary). This has to do with how Camzyos relaxes the contraction of the heart. From what I know, that rarely occurs but they are required to warn patient and monitor for it. Drug interactions can worsen this so we need to share what meds we taking and if we change anything. There are newer agents being studied (Aficamtin) which don’t appear to have the same drug interactions and require less echos.

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Profile picture for boatsforlife @boatsforlife

Hi @haasil and welcome to the family. I hope folks here can help answer your question. This support group has been an amazing support for me. I assume you probably found the video https://www.camzyos.com/resources but in case you haven't, I recommend it. But first, I am no expert - I'm just an idiot who watched a video. So take everything that follows with that in mind.... The way I understand it, Camzyos doesn't actually cause any structural changes to your heart (thinning out the the thickened muscle), but it also doesn't really just treat/mask the symptoms either. Rather, it affects how the compounds myosin and actin interact with each other to help your heart contract and relax better. So while the Camzyos is in your body, it helps the heart pump better DESPITE the thickened muscles. But if you go off Camzyos, (when the last traces are washed out of your body), things go back to the way they were - same thickened muscles as always, but back to the old impaired contract-relax cycle. Now that being said, I'm defining "symptoms" as "the things I feel." But if you define "symptoms" as "the things I feel AND the numbers that show up on an echocardiogram" (see the post from @andyherman3), then YES, Camzyos is working on the symptoms. But again, not just by masking them. Did that make sense? It made perfect sense in my head, and I hope it translated properly. For what it's worth, I was lucky enough to be eligible for Camzyos, and that it worked immediately and amazing well for me. 17 years of debilitating symptoms 100% gone in under 2 weeks. Whatever you elect to do, I wish you good fortune!

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@boatsforlife Thank you - this is very clear and very helpful. My sense of things is that only surgery changes the underlying structural issues. However, any medication that reduces symptoms or improves quality of life is a big plus. If the medication itself causes unacceptable side effects - then go off it - you are not worsening the condition by doing so.

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For me it removed the obstruction

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