Anyone take new drug Camzyos (mavacamten) for HCM?

I just received a call from my cardiologist. I am going to see him Monday, but he wanted to call to tell me that everything from the echo still looks great and my EF is now 60-65%. It was 55% last time. HOWEVER since my LVOT is still at 8, (remember it was at 75 before Camzyos) he said their protocol is to make me stop taking the medication!!! WHATTTT???? They said stop it for a month, have another echo in a month and go from there. I DO NOT want to start feeling miserable again! He said he knew I would have a fit, so he called them and asked why in the world this is written this way and they said ya, it shouldn't have been written that way. They went on to say that at this point if the cardiologist feels that it is safe and in the best interest of his/her patient's health and well being to stay on the 2.5, that he could override the protocol. He said my heart is actually doing better and he wants to keep me on it and do another echo in a month. He said he may get kick back from the specialty pharmacy but he was calling them. This is not OK! I know they have to be careful so we don't have heart failure, and this is all still new, but this is extremely stressful, knowing how good I feel now and how horrible I felt before.

Well, I am on day 12. I have not been feeling great since Sunday; sorta off feeling- a little lightheaded, more fatigued, some increased shortness of breath, blood pressure and heart rates are up.

So, after some back and forth pushing with my cardiologist, who said side effects are rare and did not think my symptoms were caused by Camzyos, he ordered an echo and got me in for it today. He is a Rock
Star, and a major advocate of Camzyos, so when he speaks the hospital jumps. I will report echo findings once I get them,

I hope these symptoms are temporary and the miracle drug will give me a better quality of life. I remain positive and hopeful.

Good-I am not at all sure that this yo-yo on our hearts is good, but being able to talk to each other is invaluable. My doctor is honestly frustrated-I am the first patient in the whole practice to do this. He feels like they reel us in with the 5mg dose-we all feel great, but then you don't get it on time or they change the dose etc., and then? He has LOTS of other patients besides me and he has been put on hold for over 30 minutes, when he needs to see other patients etc. He did what he needed to do but then I was put on hold getting the lower dose-which I was not happy about since I was feeling so good, while he had to fill out a prior authorization form AGAIN for the lower dose? He told the BMS reps to stop playing games. Good on him! I hope you don't feel the symptoms we all faced before you get your new meds. BMS needs to be held accountable... Thank you for updating. 🙂

I got a call from Camzyos Rx, they won’t be sending it out till tomorrow to arrive her Friday..
I won’t have taken it for 3 days by the time it gets here and then will wait until 0800 the following day to start again .. I’m trying to be consistent. Seems to be corrected with the pharmacy but I don’t have faith..
All still seems well at the moment with no degradation in effectiveness but to be honest I’m not pushing any physically challenging chores.

Hi David-That is SO irritating. The kinks are not fun. I have dealt with stuff like this too when my doctor had to change me from 5mg to 2.5, It was very stressful. I am also having very vivid dreams each night! Strange! We must be sleeping well! I hope this gets fixed tomorrow!
Kelli

Hi Hans-Thank you so much for your response. Yep I feel the same way. I have had some chest tightness and feeling like someone is squeezing my heart at times. Please let me know what your doctor says. I go to mine on Monday and I will let you know what he says as well. Take care! 🙂

Hi David, Do you have a Nurse Care Manager assigned to you by BMS?
I was also someone who ran out of meds and went 6 days without (didn't notice any issues until day 5). A week after this event I had a regular check in from the nurse care manager and she advised that if this ever happens again to contact them and they will expedite a resolution.

I’m so irritated
The red tape is exhausting, I’m out of Camzyos no one can tell me what the 1/2 life is while I wait for it to get fixed.
Total days 35
5mg at 0800
Wt 267.3
Male 59yr
20oz coffee and 10oz of ice cold Dr Pepper. I’ve had absolutely zero adverse effects and the shortness of breath has diminished significantly. I haven’t changed my diet but I’m more active now because I’m feeling better..hopefully within the week I’ll get my meds and start this all over again.
I know this sounds weird but since starting Camzyos I dream vividly every night., I used to not.. anybody else?

Well I’ll pick this up when I get my meds and start again..

Have awesome days y’all
David

Good Morning!
I've purposely been holding off on making any statements about how I'm doing on the lower 2.5mg dose because I wanted to make sure it wasn't just in my head. I certainly had a bit of anxienty over changing the dose because I didn't want to lose how amazing I was feeling, and also recognize that emotions/fear are not reality. I've been on the lower dose for 3 weeks now and while I still feel pretty good in general, I've defintely noticed that I start to get out of breath after about 1/2 mile of walking. Thankfully no chest tightness like before being on this drug, but defintely have lost some of my new found "omgIfeelGreat!"
I'm going in for my next echo on friday so we'll see.

My LVOT was 75 and dropped to 8. Which I think is really good!?! But that is why he had to lower my dose. I sure hope he doesn't take me off of it! Thank you for this info! 🙂