Anyone take new drug Camzyos (mavacamten) for HCM?

What's the deal with insurance for Camzyos? I'm waiting for my doctor's preauthorization. But, my pharmacist says the retail price is $8,000 a month!!!!! I have a Medicare Advantage plan with United Healthcare.

how is your energy level? And do you take the Toprol XL in the evening or in the morning? I am on the same doses and just feel fatigued a lot of the time. thank you

Hi and thank you! I have a virtual appointment at Hopkins in 6 months. But, of course, I contact them if anything changes beforehand. The relatively low amount of monitoring is probably because they have so much data on my heart and because my symptoms are only breathlessness and don't interfere with my lifestyle. I have no pain and can "get up a hill" though breathless. So - Hopkins is basically saying carry on - as is - unless and until something changes. I am not sure what the jardiance is doing exactly. I know the verapamil is a calcium channel blocker so it allows more blood to fill in my left ventrical. My EF is normal so I think that more blood in my heart means more blood to my body. My energy is amazingly better! Hope this helps someone and thank you for the tech info.

Hello @joycehocm,
Thank you for sharing that information. How often will you be monitored on this protocol?
In order to not reply to a post, I think all you need to do is instead of hitting the blue "reply" button at the bottom of a post, scroll a little further down and there is a "Comment" box. This is where you can post away without replying to another members post.
I'm glad to hear you are feeling so good, and surgery and Camzyos are on hold for now!

Hi all - I am not replying to anyone in particular - can someone tell me how to just do a post without using "reply?" Meanwhile, I just got back from Hopkins and a consult with the cardiologist. I got diagnosed with HOCM about 6 months ago and have had a heart biopsy to check for amyloids and all the other typical tests. My stats are "average" for our condition. The doc put me on verapamil and jardiance and I have felt terrific since. I still have some breathlessness but my energy level is incredible. He says that unless the severity of my symptoms change - and they may not - I won't have to move onto Camzyos - which would be the next step in my case. I just wanted to let everyone know this because this protocol might help for others when Camzyos doesn't help or just when you may be waiting for a procedure. The breathless spells come most after eating so I'm hoping I can get a handle on them with smaller meals. I don't have any other symptoms now. Thanks all for your wonderful information, sharing and support!

I just wanted to report that I was very nervous about getting on CAMZYOS but I did it and I have been on it a month now and I feel so much better. Then today after my first echo, I got the news that my gradient had gone from 176 to 36. Can you believe it? I feel like I’ve really received a longevity boon. My heart doesn’t hurt when I walk up hills. it doesn’t hurt at all in fact before it did frequently I felt to kick in the first night. I was lying awake and all of a sudden, I felt something open up in my chest and then I realized it was my heart, relaxing. I know it doesn’t happen that quickly for everyone, but it did for me. I am feeling incredible gratitude to the researchers who invented this and the doctors who have been doing the trials and all of you thank you for your support and this blog has been really helpful to read. I will keep checking in With any changes or developments. I have no side effects at all. I did have a strong heart to begin with the doctor told me I was a strong beat. I think people with a weaker beat. Have a harder time. Blessings abound.

As I posted in January, because of a grant delay I went 17 days without taking the Camzyos. I appreciate the response/advice from you all.
Bottom line is I truly benefit from this medication. At first I had little or no problems. Then I had a “bad” day. Next was a night when I couldn’t sleep because of breathlessness. Around the end of week one I was really struggling. Big fatigue, breathlessness and exhaustion. I’d forgotten what it was like to have HOCM.
It took about 5 days back on the meds before I started to improve.
Thank the researchers who developed this medication.

Hi @equineapha and welcome. This community has been a wonderful source of information and support to me in the almost 2 years since I was diagnosed with obstructive HCM. Take time to read through the various HCM discussions, but especially this one about Camzyos that started back in 2022 by @captainterry . It's time well spent. I hope your insurance comes through for you soon. The warnings about the medication don't actually call up heart ATTACK specifically, but heart failure. To me that sounded even worse, until I decided that HCM was effectively "heart failure." I had the choice between continuing down the road of known heart failure or trying a medication that MIGHT cause heart failure but had a high probability of being helpful in treating the heart failure I already have. Adding to that, I would now be under regular monitoring every few months to watch for untoward effects.
As @karukgirl has said (she is so wonderfully generous with her time and encouragement), there are risks to everything in life. To your question "do [I] really feel better now after taking the meds?": I've said it before but in under 2 weeks ALL of my HCM symptoms vanished completely, and my very first echo after starting Camzyos stopped my family doctor in her tracks - the effects were that profound. It's not for everyone. Some prefer or need what is offered by the surgical approaches, and maybe that's you - and that's ok. Happily, there are now treatments available that, even 5 years ago didn't exists - with more coming down the pipes even now.

@joanallione , I'm thrilled to hear that you are doing so well on Camzyos so far - it was that way for me too. When I decided that HCM is effectively a form of heart failure (whether or not it would satisfy the medical dictionaries), that made the decision easy for me. You may experience minor setbacks here and there but don't panic - stay optimistic. It's not for everyone, but Camzyos is literally life-changing for some of us.

I have been on Camzyos 10 days, and wanted to thank those who were reassuring before i started. I was super nervous all the ‘you could have heart failure’ warnings in the drug company literature. I have been pleasantly surprised that i am sleeping so much been than i have for years, have more energy and walking up hills easily. I haven’t had my first echo yet. Will report back thrn! 🙏🙏🙏