Anyone take new drug Camzyos (mavacamten) for HCM?

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 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!

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 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 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!

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 .

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!

This is great news for you! I feel fantastic. I just came back from a big walk with lots of uphill and I can't remember how long it has been since my breathing was so "good"! I was fortunate and the Camzyos kicked in pretty quickly for me and I noticed an improvement within days. It seems to continue to improve as well. I had some side effects during the first week, some nausea and an odd tingling in my lower legs. But no side effects at all after that. Happy to hear your good news - thanks for the update!

Good morning-That is such great news about your walk! I can't wait to feel like that! How many mg are you on, just out of curiosity? I want to learn as much as I can before I start taking it. I'm sure my doctor will start me off at the lowest dose? Thank you!

Good Morning from the west coast.
I am on a 5mg dose for now. 5 mg seems to be a common starting dose (although I think 2.5 is the smallest dose). I had my one month "echo" 5 days ago and my cardiologist maintained the 5mg dose for me. I think that i will have monthly echocardiagrams for another couple of months and then less often. I am so grateful for Canada's socialized medical system!
All the best!