Anyone take new drug Camzyos (mavacamten) for HCM?

I'm 71 years old, dislike taking medications, but have been on Camzyos since 8/2024. I also take 25 mg metoprolol and 100 mcg synthroid. I was started on 5 mg Camzyos and couldn't believe how much better I felt and was functioning. However, due to a rapid gradient decrease after just 1 month, my dose was reduced to 2.5 mg. Being on 2.5 mg was almost like not being on any Camzyos. After a stress echo showed that my gradient increased on exertion, I was returned to 5 mg and again feel great. Honestly, I have not experienced any side effects from the Camzyos.

I had a constant mild headache for two months...nothing debilitating, but a little "fuzzy." I hope that helps.

I am enrolled in the program but have yet to actually get the Camzyous Medication ! My insurance company hasn't approved it as of yet! ‼️ I am still having the Shortness of Breathe and Palpations at times. Pressure and sometimes Pain. I am a little afraid to take meds since reading about warnings HEART ATTACK and all
Do you really feel better now after taking the meds ? Please update me
Thank from Valerie in Alabama

Hello @equineapha, and welcome to Mayo Clinic Connect.
You have come to a great place to get answers, and the Camzyos group is a very active group with lots of information.
Have you had a chance to read some of the members posts about their experiences on Camzyos?
You will find a variety of responses, because as we all know, no two people are alike!
I think most people would share your same concerns about side effects, that is human nature to be cautious and curious about taking medication of just about any kind.
Even Aspirin has side effects, as does dare I say every drug known to mankind! Surgeries have risks. Driving a car. Flying. Climbing stairs or ladders. Just getting out of bed has risks!
It's our response to the risk that determines our path. Do we accept the risk and go forward? Or decide on another course less risky.
Sometimes it comes down to asking yourself, do I want to feel better? HOCM is such a life-sucking condition! I robs its recipients of the joy of living the life they have, and reduces them to restrictions and boundaries. Those restrictions and boundaries can lead you to say it's worth the risk to try. Your symptoms sound familiar to the process of HOCM.
Poke around here on the Camzyos group and read the stories of hope and joy, along with the stories of failure and side effects. It's all there for you to read!
Have you any idea when you will hear of your approval? When do you see your cardiologist next? Are they very up to date on HOCM and Camzyos?

Have been taking Camzyos since October . Off and on to find the correct dosage but it has helped with breathlessness and pressure a lot.

I have been on Camzyos 10 days, and wanted to thank those who were reassuring before i started. I was super nervous all the ‘you could have heart failure’ warnings in the drug company literature. I have been pleasantly surprised that i am sleeping so much been than i have for years, have more energy and walking up hills easily. I haven’t had my first echo yet. Will report back thrn! 🙏🙏🙏

@joanallione , I'm thrilled to hear that you are doing so well on Camzyos so far - it was that way for me too. When I decided that HCM is effectively a form of heart failure (whether or not it would satisfy the medical dictionaries), that made the decision easy for me. You may experience minor setbacks here and there but don't panic - stay optimistic. It's not for everyone, but Camzyos is literally life-changing for some of us.

Hi @equineapha and welcome. This community has been a wonderful source of information and support to me in the almost 2 years since I was diagnosed with obstructive HCM. Take time to read through the various HCM discussions, but especially this one about Camzyos that started back in 2022 by @captainterry . It's time well spent. I hope your insurance comes through for you soon. The warnings about the medication don't actually call up heart ATTACK specifically, but heart failure. To me that sounded even worse, until I decided that HCM was effectively "heart failure." I had the choice between continuing down the road of known heart failure or trying a medication that MIGHT cause heart failure but had a high probability of being helpful in treating the heart failure I already have. Adding to that, I would now be under regular monitoring every few months to watch for untoward effects.
As @karukgirl has said (she is so wonderfully generous with her time and encouragement), there are risks to everything in life. To your question "do [I] really feel better now after taking the meds?": I've said it before but in under 2 weeks ALL of my HCM symptoms vanished completely, and my very first echo after starting Camzyos stopped my family doctor in her tracks - the effects were that profound. It's not for everyone. Some prefer or need what is offered by the surgical approaches, and maybe that's you - and that's ok. Happily, there are now treatments available that, even 5 years ago didn't exists - with more coming down the pipes even now.

As I posted in January, because of a grant delay I went 17 days without taking the Camzyos. I appreciate the response/advice from you all.
Bottom line is I truly benefit from this medication. At first I had little or no problems. Then I had a “bad” day. Next was a night when I couldn’t sleep because of breathlessness. Around the end of week one I was really struggling. Big fatigue, breathlessness and exhaustion. I’d forgotten what it was like to have HOCM.
It took about 5 days back on the meds before I started to improve.
Thank the researchers who developed this medication.

I just wanted to report that I was very nervous about getting on CAMZYOS but I did it and I have been on it a month now and I feel so much better. Then today after my first echo, I got the news that my gradient had gone from 176 to 36. Can you believe it? I feel like I’ve really received a longevity boon. My heart doesn’t hurt when I walk up hills. it doesn’t hurt at all in fact before it did frequently I felt to kick in the first night. I was lying awake and all of a sudden, I felt something open up in my chest and then I realized it was my heart, relaxing. I know it doesn’t happen that quickly for everyone, but it did for me. I am feeling incredible gratitude to the researchers who invented this and the doctors who have been doing the trials and all of you thank you for your support and this blog has been really helpful to read. I will keep checking in With any changes or developments. I have no side effects at all. I did have a strong heart to begin with the doctor told me I was a strong beat. I think people with a weaker beat. Have a harder time. Blessings abound.