Anyone take new drug Camzyos (mavacamten) for HCM?

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?

Is this medication available in the United States through the Mayo Clinic. I’m a Vietnam veteran 76 years old and I was diagnosed with hardening of the left ventricle. Does this medication act as a softener for the left ventricle?

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

Hello -
Camzyos was recommended for me by my Cardiologist for my HCM. It is very new and currently VERY expensive, but since they are trying to introduce this new medication as the best available treatment it is currently completely covered for me. Perhaps by the drug company? My doctor lined me up with the Camzyos representative in Quebec. There were some hoops but not many. Best talk to your doctor about this . Are you in Canada? If you are in the US I have no idea regarding the process there. I am in BC and I gather there are a dozen or so people now taking this in my province. I am very pleased with the results. Hope this helps.

yes it interacts with a lot of Medications and because its so new they dont know everything…i can understand why you are nervous 😣☺️

Good morning-I had asked if anyone has had surgery, while on Camzyos, and how it worked with the anesthesia. I had my cardiac clearance appointment on Monday and got the clearance for my foot surgery, in July. He looked up the anesthesia they usually use-Propofol, and it said there was an interaction with Camzyos, so he is calling the head anesthesiologist at our hospital to see what else they can use. I am a bit nervous-but he said I will be fine. I also need to call the specialty pharmacist about all of this and whatever pain meds they prescribe for afterwards.

Good morning! I had surgery on my foot last Thursday and everything went well! I was nervous about the anesthesia and Camzyos, but the doctors were all informed about me being on Camzyos, and there were no issues! My cardiologist contacted the director of anesthesiology at our local hospital, and he called me! I couldn't believe it! He said he read my doctor's report and they would be using the smallest amount of anesthesia they could and I would be fine. The anesthesiologist told me he was going to try using a sedative, but would go to general anesthesia if he needed to. He ended up needing to and I am fine. Yay! Good luck with your surgery! 🙂