Anyone take new drug Camzyos (mavacamten) for HCM?

It was a 5 month wait for me in 2022. Coming out of the COVID hold on a no-surgery-taking-place period of time, there was a backlog. From what I have read on this blog, the waiting times have been somewhat shorter.

Are you having the surgery at Mayo in Rochester? If so, when arrangements are made for surgery, how long do you have to wait before they can actually do the surgery?

I go to Rochester in 2 weeks for an eval, and I am confident surgery will be scheduled. I am curious about the wait time between the decision and when it can do done.

I understand your nervousness about the upcoming surgery! Many, many of us were in your shoes and quite frankly, I think your relatively mild "quite nervous" is an understatement. Please be sure to read all of the posts in the blog Debra @ karukgirl recently started called What I Learned From My Open Heart Surgery. Where will it take place? At a COE (Center of Excellence) you will be in good hands - nevertheless, of course, who would not have those feelings before surgery? Find out all you can, read the posts to learn how to prepare and what to expect. Keep in mind that we are all different - resulting in slightly different experiences. ((HUGS))

I wanted to be able to take this so bad..I qualified and took it for almost a month until my first echo..but it gave me horrible headaches..that is the only side effect I had. But that was enough for them to take me off of it. I had hopes it would help reduce the obstruction and prevent surgery. Alas, not so, surgery, here I come in June..quite nervous.

I started with Camzyos - 5mg from October-07-2024. It has given me little relief and can now breath better.

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.

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.

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.

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

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.