Anyone take new drug Camzyos (mavacamten) for HCM?

Thank you! I think I will be the first one taking Camzyos, in my cardiology group. I did find out that my insurance, Cigna PPO, will cover everything! I am so thankful! Going for my baseline echocardiogram today and meeting with the cardiologist next Friday, to hopefully get the ball rolling! How are you feeling? Are you noticing a difference? Thank you!

Yes I am on it through Bristol Myers Rems program .
my cardiologist at Cedars in LA put me on it .
Been taking it for 8 months .
First started on 5 mg but it did nothing gir 3 months .
Then 7.5 for 3 months dtill did not seem to work .
Nie I
on 10 and I feel like it may be working but I will have my ECG
next week so we will see .

I wish that I had answers for you. My cardiologist has a few HCM patients taking Camzyos so was very well informed regarding the medication and the set up. I have additional private insurance with Manulife (the least expensive 3 star option) but that seemed to somehow make me eligible for a supported "bridging" program. Without that there is no possibility of my being able to afford this medication! Bayshore pharmacy is handling this and my medication is couriered to me. I don't know if these details help at all. Good luck!

I have a few questions for anyone who is taking Camzyos. How long did the process take? My cardiologist needs to become certified. Is that a long process? How long does it take for the finances to be worked out and to then get the medication? I am so tired of this shortness of breath and not being able to do anything. I am SO anxious to start the program!

I was wondering if those of you who are currently taking Camzyos are working with your cardiologist, or if you went to a Center For Excellence instead?

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