Anyone take new drug Camzyos (mavacamten) for HCM?

@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.

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! 🙏🙏🙏

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

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?

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

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

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.

What are the minor side effects? Thx!

Any tips about hydration or nutrition while taking CAMZYOS would be helpful also, does anybody have the experience of getting a headache?

I appreciate your nervousness using a newish heart drug. I was too, however the alternative of being so tired that I just wanted to give it all up overcame the hesitation. My echocardiogram results supported my feeling that I had my mojo back! I started off at 5 mg went down to 2 1/2, but then went up again to five when I could tell the difference with a half dose. I haven’t had any side effects from camzyos that have disrupted my life. I do tend to sleep a lot but I have given up the two hour naps in the afternoon pre-Camzyos. I am so grateful that I had a cardiologist (in Canada) who thought that I was a candidate for the drug. Each visit I give him my thanks. Ask questions of your SBM support nurse and your cardiologist. They have had some experience now with the results of the drug. This Mayo Clinic group of wonderful people has been an endless source of support and information. Welcome aboard.