Anyone take new drug Camzyos (mavacamten) for HCM?

I live in Victoria BC and have a Cardiologist here. I don't think I should publicly post his name, but I understand that there are now a few patients in the area either on or about to start Camzyos.

I really recommend looking into this. The improvement in "breathing " has been very noticeable. There my be other considerations with each individual that do not make this medication appropriate, but your doctor will know. Best of luck!

My cardiologist recently recommended Camzyos for me to consider. I am 58 and have OHCM. I have been really struggling with shortness of breath and frustration over not being able to exercise and subsequent weight gain. I am feeling scared about all of the warnings of heart failure, but also feeling hopeful that I can get back to feeling normal! I am retiring from teaching in a year and a half and want to play golf, walk, do all of the things I love to do. Your comments have given me hope! Thank you! I am meeting with him again on March 24th. So we shall see!

I’ll be curious to see how you BC HCM folks find the Camzyos. I understand that Camzyos may soon be covered by pharmacare in BC. The predicted cost is $23,000 a year but that is before any deductions from the pharmacare program - based on what I can tell. It is under consideration for coverage right now. However I understand the drug manufacturer may be providing some kind of subsidy until the pharmacare decision is out.

I’m from BC too and am on the fence about trying it. I am on metoprolol and disopyramide and it seems to do the job, except for some occasional blips now and then.

Good luck

Oh where is your cardio btw? I'm from BC too

Thanks so much! Hopefully I can get started soon too

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.

Hi Jess

I was wondering how you go about purchasing in Canada? Do you have to buy directly and how much is it?

Thanks

Regarding Camzyos - I have been taking this new medication for 1 week only, but so far I have nothing but good news. My breathing has notably improved and my energy along with it. I had some reactions in the first few days but those have mostly abated. I had some periodic nausea and an odd tingling in my lower legs. I am mentioning these things for anyone just starting on this new med. I haven't felt so so well in a while. I feel like I am sleeping has improved - which may just be a "state of mind" thing, but of course I wonder if the medication is responsible. For me - big thumbs up. Hoping for good readings on my ECGs upcoming.
I wanted to post this because I was QUITE hesitant initially.

I really appreciate you reply. I will be starting on Camzyos in the next week or so. I was hesitant initially because it is such a new medication but I have decided to go ahead. I will post my comments on this forum in the next little while when I see how this works out for me!

I was diagnosed with hcm in October 2021 at the age of 62. I started the Camzyos in June 2022. My dr and I both had to get in rolled in the rems program. ( I am NOT in the trial program) I had good results from the medication right away . Before Camzyos I was napping a lot during the day.I am now able to go without any nap some days or just one nap. I am able to participate in life now. I still do have to watch what I do and not over do things. But I am able to do things which is so nice. It has made a big difference for me. My copay for the Camzyos is $10.00 a month . They really want to make sure everyone who needs this medicine can be on it . They also do cover the fee for my echocardiograms. I am so thankful for Camzyos it has given me back some of my energy. The doctor does not hear a murmur anymore and the the people that do my echocardiograms are amazed at the difference they see also.