Anyone take new drug Camzyos (mavacamten) for HCM?

I have on Camzyos for 2 -3 years now. It works really well for me at the 5mg dose. If I forget to take it I really notice the moment I go for a walk. The difference is huge. I have no side effects that I am aware of although I did for the first week or two. Just minor things, minor dizziness and some tingling in the legs. If I forget to take it becomes immediately obvious upon exertion. Hoping that it continues to be a solution for me.

Hello @mbi . Back on July 17 the same question was posted to the related conversation "Does Camzyos reduce thickening of the heart or manage symptoms?" My response (pasted in below since I don't know how to link directly to that message), says that **IN MY NON-MEDICAL OPINION** it kind depends on how you define your terms. Whether I have interpreted the question or the actual medical information correctly, I suggest you check the video at the camzyos website (https://www.camzyos.com/resources#video1). It was very helpful to me. And regardless where you go on your HCM journey - Best wishes!

Message from related conversation:
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#video1 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!

Hello
Having HCM, I have been on Camzyos since November of 2023. I started on 5 mg and then in March was reduced to 2.5 mg. because I was doing so well (my cardiologist was following the BMS protocol). However, I found that that dosage was not giving me the same visible results that the 5 had done so I asked to be put back up to 5 mg. I’ve done so well. No other medication has changed.The difference is amazing in that I can now walk up hills without getting winded plus, more importantly for me I regained my joie de vivre. I see my cardiologist next week and I hope that the tests show what I feel is a huge improvement. I’m 76.
This support group has been an endless source of information and encouragement.

Good morning-I went to Steamboat Springs. Colorado, last summer and didn't have any problems. It was about 6900-8000 feet. I was there for a week. 🙂

Hi Karen,
I am on month 2 of Camzyos. I went from 257 LVOT down to 57. Still on 3 blood pressure meds and still tired with naps. Hopefully this will improves. Did it improve for you right away or over time? Thanks.

Thank you im 77 and about to start Camzyos nervous about it.

Thank you im 77 and about to start Camzyos nervous about it.

I am on 15 mg of Camzyos and have had minor side effects. Having a team monitor all medicines you are taking and how you are feeling really makes the process easier. For instance, at one point I began experiencing arrhythmia and the nurse advocate adjusted another medicine I was taking (metoprolol) and instantly I had relief. Camzyos has changed my life. I couldn't walk up a hill without stopping for a breath. Walking up hills isn't daunting for me anymore. I hope you get the care you need and attain great results as I have!