Anyone take new drug Camzyos (mavacamten) for HCM?

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!

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 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.

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

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.

Yes, that's what I want to know more about!

Eat smaller meals--try a smoothie (e.g. puree blueberries or strawberries (or other fruits) or even avocado, with something healthy like low fat dairy (yogurt, plant-based milk, orange juice, etc.) mid morning (10:30 am or so?). Light lunch with lots of salad fixings (avoid salt) use olive oil for dressing and--keep dinner light (avoid salt, sugar, flour, and oil, such as pastas, breads, fried stuff, cream sauces, etc. ( lightly steamed broccoli, brussel sprouts, cauliflower, cabbage) are very healthy, along with baked or grilled chicken or salmon. if you're still hungry before bedtime, have some a small smoothie (above) or a little oatmeal with berries or honey. This just might help with shortness of breath (SOB). Personally, and surprisingly, I also found that the more I walk or bike or swim, the fewer SOB episodes and papitations I have! I'm not a doctor--just another HCM patient.

Hi! I am in month four of Camzyos. It was suggested that I call the Health Well Foundation and apply for a grant to cover co-pays for a year. They were very helpful.

Actually, it is closer to $9,000 per month, You won't get Camzyos from a regular pharmacy. It is shipped to you each month from a specially certified pharmacy after a consultation with their pharmacist. They assign an advocate to you who will work out the money end of it for you. They will sign you up for an assistance program that is not based on income. You get an advocate, nurse advocate, and pharmacist that is always available to you.

It seems like it take forever to get started, but once the ball is rolling, it will work out.