Anyone take new drug Camzyos (mavacamten) for HCM?

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 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))

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.

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.

Question- it gave you little relief but you can now breathe better? Can you explain. I am considering. Thanks!

How is it going on Camzyos?

I am in Melbourne Australia. Been on mavacamten for 13 days, as was diagnosis with asymptomatic obstructive hypertrophy cardiomyopathy.
I did have problems with getting the authorized script filled as no pharmacy in my area knew the supplier. It’s been approved here since July.(?) I found this info on the papers cardiologist gave me and sent to local pharmacy. They had it within 24 hrs. Was $2323 now $30 or concession $7.70
I have been told by my cardiologist to continue my gym /aerobics as usual. I track my fitness with an Apple Watch. Last 3 days have seen my H R return to what it was before.( it was always perfect. ) I feel no difference either way. Has anyone else notice their HR increase to a normal level. I am also taking beta blockers. Barb

I have been taking Camzyos for a week. My copay is $250.
They do a lot of testing before and during treatment. It can only be prescribed if you are at a COE (center of excellence) so I feel like it is worth a try. I had nausea the second day and have had general fatigue. I expected to be able to notice an improvement early on but I haven’t. I’m still hopeful and will keep you posted.
I volunteered to be in a clinical trial at the university where I am receiving care. They are testing blood flow before taking the drug and after I am on a maintenance dose. I feel better when I learn as much as possible and I didn’t take this decision lightly.

After seeing the warning that a side effect could be heart failure, I decided it wasn’t worth the risk. I understand that all meds have possible side effects, but heart failure is scary. So I’m having a septal myectomy.

Having heart disease in general is definitely a very scary thing to hear. Keep us posted on your journey on the septal myectomy road, mine was just over 3 years ago and I so very glad I put aside my fears and practiced courage. Where will you go for yours?