Anyone take new drug Camzyos (mavacamten) for HCM?

Posted by captainterry @captainterry, May 25, 2022

Since FDA approval in April has anyone (non-clinical trial patient) actually obtained a prescription and had it filled? If so, when and where was the cardiologist located? Is the registration process for doctor/patient/Rx taking a long time for this much anticipated drug?
Thanks from a fellow patient!

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

katiekins | @katiekins | Mar 24 8:58am

In reply to @andyherman3 "Please keep us posted as I am very interested in the results and benefits of aficamten" + (show)

Likewise please. As someone who has always had low pulse readings 48/58 it’s suddenly become 126 and steadied at around 70/80 with palpitations and out of breath. Really strange but might have happened anyway. Any similar stories any one? Thank you wishing you all well.

deanna529 | @deanna529 | Mar 24 10:37am

Probably people don't want to share that information. LOL
I shouldn't say it did not help....just not enough. I traveled for top doctors at UPENN and consulted with several doctors before I made the decision. Remember this was 2017. HCOM was pretty rare back then. I think it has come to light more recently. I remember even at that hospital a lot of people never heard about it and wanted to hear my heartbeat. If I remember correctly, the numbers were 1 in 500 people had it. It seems to be much more prevalent now.
I was told at one hospital not to let just anyone operate on me....To do my homework, which I did.
The way I see it is I got a few more years than expected. Every case is different. I took a chance and would do it again if I had to. But today new drugs are coming out all the time. So If the surgery can extend your life, go for it. That is after you try new drugs...that were not available to me in 2017. Good luck to everyone.

deanna529 | @deanna529 | Mar 24 10:44am

To captainterry (@captainterry)
I obtained my RX for Mavacamten at NYU. Dr. Sherrid in 2/28/22

walkinggirl | @walkinggirl | Mar 24 3:01pm

In reply to @deanna529 "I also had a septal myectomy in 2017. Didn't help. I thought it would. The doctor..." + (show)

Deanna, I wish it had worked for you. Am surprised it did not because it's touted as the Gold Standard surgery for HCM and has been done at Mayo since 1959. I think the obstructive type is less common and, as in my case at that point in time, surgery was imperative if I was to live. I was also very surprised that 1 in every 500 people have HCM. Perhaps its wider prevalence is due to awareness in the medical field. What was unique about your heartbeat? Mine was a loud murmur. Has anyone suggested an alcohol ablation for the bottom part of your heart? Just wondering.

deanna529 | @deanna529 | Mar 24 3:11pm

In reply to walkinggirl@walkinggirl
I was offered alcohol ablation at the same time as I was offered septal myectomy. I chose septal myectomy because it was permanent. No one ever offered alcohol ablation for the lower part of my heart after that. I don't think that I would have done another procedure. Just sayin'

maree56 | @maree56 | Apr 2 12:05am

I'm maree from australia I have Obstructive HCM. Been on Camzyos for 3 months get tired easly still having echocardiograms next week to see if anything has changed and monitor progress.
How is everyone else going ?

manuelpo | @manuelpo | Apr 2 3:59pm

I am on my fifth day of camzyos 5 mg and I feel some improvement with less pressure on my chest. I have strong faith that this medication is working. My Echocardiogram is scheduled in 3 weeks. It should show some improvement by reducing some of the gradient pressure I have. I wish this treatment works for everyone.

Debra, Volunteer Mentor | @karukgirl | Apr 3 9:35am

In reply to @maree56 "I'm maree from australia I have Obstructive HCM. Been on Camzyos for 3 months get tired..." + (show)

Hello @maree56, welcome to Mayo Connect!
I'm glad you found this site...and all the way from Australia too. Have you had time to poke around on here? There is a lot of information shared by other members that you may find interesting and helpful.
Every person is so unique and no two are alike, therefore each can have much different reactions to Camzyos, or any med really. You mention you have been on Camzyos for three months for HOCM and you still tire easily, did you have that same feeling before Camzyos?
I bet you are excited/anxious to learn the results of your upcoming echo, will you come back and share your progress?

par4rosy | @par4rosy | Apr 4 11:04am

In reply to @katiekins "Likewise please. As someone who has always had low pulse readings 48/58 it’s suddenly become 126..." + (show)

After 4 months on camzyos and doing really well; I went into afib two weeks ago.
After a cardioversion when my my heart was reset, I am doing ok.
Still on camzyos so clearly no connection with my newest ailment.

katiekins | @katiekins | Apr 11 4:15pm

Horrid drug for me since I started on Janaury 9th 2024, amazing first week then the side effects stated severe headaches, aching muscles, eye disturbance.... etc....I was on Veramamil at the same time could it have been that who knows.....now April having have developed Atrial Fibrillation during the past month... Never ever had this before.....Seeing my cardiologist on the 23 rdApril we shall see...I am delighted for all of those that have had their lives changed by this drug...sadly I am not one of those and am looking at septal myectomy soon.
Keep well and safe all....