Anyone take new drug Camzyos (mavacamten) for HCM?

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.

i’m curious about why you could not take Metroprol?
I’m on Metoprolol XL 25 mg. twice a day.
The cardiologist wants me to go to once a day for two weeks and then try to discontinue it in a month.
I don’t have shortness of breath, chest pain, etc. but I do have a lot of fatigue.
would appreciate anyone’s feedback that is on this medication.
The Camzyos has brought my numbers down to normal.

Thank you so much for your response I hope I have the same outcome as you have

Hello again @don69. The drug has actually gone through very rigorous testing and approvals the same as every other new medication. The FDA will have evaluated Camzyos and decided that, based on scientific evidence, it is worth approving. As to your other comments about false hope and the drug not doing anything for people with HCM, I would have to differ. Certainly there will be some people who don't respond well to it, but that is the same with every medication. Personally, I could not tolerate metoprolol, but it work tremendously well for many (most?) people. Using myself as the example again, Camzyos took me from being unable to climb stairs or even bend down to tie my shoes, and completely cleared up all of my obstructive HCM symptoms. As I said, the way I have read the hundreds of posts in this thread, Camzyos seems to be very beneficial for most of the folks here. Of course if you meant that it doesn't do anything for people with non-obstructive HCM, then you are correct. Unless something has changed recently, it is ONLY prescribed for obstructive HCM (oHCM or HOCM), and even just for a specific sub-set of those folks, and not for non-obstructive HCM.

No still waiting for the Mayo to get back to me.
Thanks for your input truly appreciated.
Lou

Hello @kalu2512,
First of all...thank you for serving your Country. It is because of brave men like you we are free!
Camzyos is a new drug approved for the treatment of Hypertrophic Obstructive Cardiomyopathy. It works by binding to myosin protein in the heart and allows the heart to relax.
Camzyos is available in the US, but not through the Mayo Clinic. Because Camzyos has some serious risks, it is part of a restrictive program and both you and your healthcare provider must be enrolled to participate. You can only get Camzyos through pharmacies that are also enrolled in the program called REMS (Risk Evaluation and Mitigation Strategy)
I am not familiar with the diagnosis of hardening of the left ventricle...do you know the actual medical term for this?

It sounds like it looks like this drug doesn't really do anything for the people that have HCM what's your thoughts on it

I don't understand why the FDA would approve this drug without really Having scientific facts On this drug they give people False hope

Hi there @don69 . You are probably right to have reservations about taking any medication, but especially one that is still relatively new. It will take a few hours, but I strongly suggest that you start with the first posting in this discussion and then read your way through up to the most recent. What you will find is that lots of people have had lots of concerns - all of them valid. Some people seem to have had no net benefit from Camzyos, some have had negative effects, some have had positive effects, and some mixed - just like any other medication. The way I read it though, most of the folks posting here seem to have be benefitting from being on Camzyos. For me it was quite literally life changing at age 59. If you haven't already done so, also check out camzyos.com and watch the videos. Yes, they are from the drug company itself so they are biased, but they make it easy to understand what the drug does for/to you. Good luck wrapping your head around this difficult decision.

Have not started Cazoys yet. I am somewhat leary taking it do not have many choices. Does anyone have any feedback