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DiscussionAnyone take new drug Camzyos (mavacamten) for HCM?
Hypertrophic Cardiomyopathy (HCM) | Last Active: 1 day ago | Replies (844)Comment receiving replies
Replies to "I am enrolled in the program but have yet to actually get the Camzyous Medication !..."
Have been taking Camzyos since October . Off and on to find the correct dosage but it has helped with breathlessness and pressure a lot.
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.
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?