1. < Hypertrophic Cardiomyopathy (HCM)

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!

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mspope111 | @mspope111 | Apr 15 12:37am
In reply to @karen317 "I am karen317 I wrote in a year ago . I thought I would give you..." + (show)
@karen317

I am karen317 I wrote in a year ago . I thought I would give you an update. I am still doing very well on the Camzyos. I also was very hesitant about taking the medications especially with the risks. My personal thought was I wasn’t living much of a life wanting to nap all the time so it was well worth the risk. Fast forward I have been on the medication for almost 2 years now . I am still doing really well . My drs and the echo cardio gram crew are all amazed at what they see in my tests . Main thing I feel better I am able to do things I would not of been able to before the medication. Right now I am babysitting for my 3year old granddaughter and 6 month old twin grand babies every week day. I also am taking my elderly mom to physical therapy 2times a week and her to her dr appointments . I am exhausted at night but I am able to help my loved ones. I know there is no way I could be doing this without Camzyos . I just want to say to anyone thinking about trying it and your cardiologist feels you are a candidate to really think about it and weigh your pros and cons . I am so thankful for the Camzyos.
P.s. I also think getting the echos every 3 mos gives the drs and myself comfort in how I am doing . We will know right away and take the right steps

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Hi Karen,
I am on month 2 of Camzyos. I went from 257 LVOT down to 57. Still on 3 blood pressure meds and still tired with naps. Hopefully this will improves. Did it improve for you right away or over time? Thanks.

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walkinggirl | @walkinggirl | Apr 12 10:40am
In reply to @deanna529 "Probably people don't want to share that information. LOL I shouldn't say it did not help....just..." + (show)
@deanna529

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.

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Good comment, Deanna. When I was diagnosed with HCM, neither I nor anyone I knew ever heard of it. I think HCOM as a diagnosis is fairly new, as a condition it probably has been around for generations. I, too, was the heartbeat demonstration - glad I could help out. More is learned every day and in some places, young athletes are screened.

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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....

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2 replies
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)
@katiekins

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.

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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.

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Mentor
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)
@maree56

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 ?

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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?

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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.

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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 ?

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1 reply
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'

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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)
@deanna529

I also had a septal myectomy in 2017. Didn't help. I thought it would. The doctor had a problem taking the heart size down on the bottom. Don't want to go through another open heart surgery.
I am so happy the myectomy worked for you!
I am not giving up 🙂

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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.

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deanna529 | @deanna529 | Mar 24 10:44am

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

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