1. < Hypertrophic Cardiomyopathy (HCM)
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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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gjs | @gjs | Jul 19, 2024

Thanks for the explanation.

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andyherman3 | @andyherman3 | Jul 20, 2024

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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joycehocm | @joycehocm | Apr 29 7:41am
In reply to @boatsforlife "Hi @haasil and welcome to the family. I hope folks here can help answer your question...." + (show)
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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dbruskin | @dbruskin | Apr 30 2:25pm

For me it removed the obstruction

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carolinca | @carolinca | May 13 9:36am
In reply to @haasil "Hello, Thank you for responding to my question. I was diagnosed last year February after an..." + (show)
Profile picture for haasil @haasil

Hello,
Thank you for responding to my question. I was diagnosed last year February after an echo for a murmur and was seen by a Camzyos cardiologist but because of some circumstances with paperwork I decided to see another cardiologist for a second opinion mostly due to the black box warning. I have once again been recommended to use Camzyos. I do get short of breath at times and a little tired but have no other symptoms and am not restricted in my movements or daily activities. I have researched as much as I can to try and determine if the pill reduces the thickening but cannot find any answer. My doctor said it could but nothing definite from him or online which is why I thought to try the support group. From what I can determine, it is basically for symptoms which I don't have a lot of and the only way to reduce the thickening is through Alcohol Ablasion or open heart surgery. I will continue to research and will make a decision soon about starting the program. Thank you again for your kind response

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@haasil

My understanding is that Camzios can help symptoms but that the only drug that reduces thickening is Myqorzo (Aficamten)

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