Anyone take new drug Camzyos (mavacamten) for HCM?

I am a Canadian (71 yrs old) with HCM living in British Columbia and have recently had my Cardiologist put me forward for Camzyos. He has connected me with the local distributor for this new medication. I am just sorting through my own research and confess to some anxiety. The medication is very new and not with potential side effects. I am leaning towards trialing this and will certainly post when I do.

Terry - I greatly appreciate your response. Nothing is better than a candid review from someone in the same situation. This is such a new drug, and I can get a little obsessed with "due diligence". I am nearly certain that I will try Camzyos and I will give feedback on this forum for others. Thanks for your "testimonial"!

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.

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!

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.

Hi Jess

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

Thanks

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.

Thanks so much! Hopefully I can get started soon too

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

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