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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joycehocm | @joycehocm | Feb 14 1:53pm
In reply to @joanallione "I just wanted to report that I was very nervous about getting on CAMZYOS but I..." + (show)
@joanallione

I just wanted to report that I was very nervous about getting on CAMZYOS but I did it and I have been on it a month now and I feel so much better. Then today after my first echo, I got the news that my gradient had gone from 176 to 36. Can you believe it? I feel like I’ve really received a longevity boon. My heart doesn’t hurt when I walk up hills. it doesn’t hurt at all in fact before it did frequently I felt to kick in the first night. I was lying awake and all of a sudden, I felt something open up in my chest and then I realized it was my heart, relaxing. I know it doesn’t happen that quickly for everyone, but it did for me. I am feeling incredible gratitude to the researchers who invented this and the doctors who have been doing the trials and all of you thank you for your support and this blog has been really helpful to read. I will keep checking in With any changes or developments. I have no side effects at all. I did have a strong heart to begin with the doctor told me I was a strong beat. I think people with a weaker beat. Have a harder time. Blessings abound.

Jump to this post

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!

REPLY
1 reply
Mentor
Debra, Volunteer Mentor | @karukgirl | Feb 15 9:53am
In reply to @joycehocm "Hi all - I am not replying to anyone in particular - can someone tell me..." + (show)
@joycehocm

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!

Jump to this post

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!

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1 reply
joycehocm | @joycehocm | Feb 15 10:06am
In reply to @karukgirl "Hello @joycehocm, Thank you for sharing that information. How often will you be monitored on this..." + (show)
@karukgirl

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!

Jump to this post

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.

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peggynurse | @peggynurse | 1 day ago
In reply to @peggynurse "thank you so much for your reply. So you are still on 12.5 of Metropol and..." + (show)
@peggynurse

thank you so much for your reply. So you are still on 12.5 of Metropol and five of Camzyos? good to hear from you.

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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

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