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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boatsforlife | @boatsforlife | Sep 23, 2023

Good evening folks. Geoff in Canada. Starting Camzyos this coming Tuesday. Have been trying to track down the problem since 2006, and a month ago a new echo and a new cardiologist said HCM, bring on the Camzyos. I've been lurking and reading all of these posts for the last week. Encouraging to see that many (most?) of you end up with positive responses to the med. Scary to see the "5mg-2.5mg-stopping" path some of you have had to take. Makes me remember the 1990 Robin Williams movie Awakenings. Will update the group as my journey proceeds.

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2 replies
quinn | @quinn | Sep 16, 2023

avcowie
I'm class III as well.

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avcowie | @avcowie | Sep 15, 2023
In reply to @quinn "avcowie OOPS! I left a letter out of the acronym for New York Heart Association. It's..." + (show)
@quinn

avcowie
OOPS! I left a letter out of the acronym for New York Heart Association. It's NYHA . . . a classification for heart conditions according to severity. Class I means no trouble with physical activity. Class IV means unable to carry out any physical activity without discomfort. I had to ask my Doc which I was so not surprised you are not familiar with it.

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I’m guessing I would classify as a III. What is your class?

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quinn | @quinn | Sep 15, 2023
In reply to @avcowie "I am 56. I’ll write an update after surgery. Please define what an NYA is and..." + (show)
@avcowie

I am 56. I’ll write an update after surgery. Please define what an NYA is and what the classification means. I don’t know much of the jargon.

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avcowie
OOPS! I left a letter out of the acronym for New York Heart Association. It's NYHA . . . a classification for heart conditions according to severity. Class I means no trouble with physical activity. Class IV means unable to carry out any physical activity without discomfort. I had to ask my Doc which I was so not surprised you are not familiar with it.

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1 reply
avcowie | @avcowie | Sep 14, 2023
In reply to @dbrima "I, too, had no benefit. I took obit for 8 months and had a septal myectomy..." + (show)
@dbrima

I, too, had no benefit. I took obit for 8 months and had a septal myectomy 6 weeks ago. I feel better after the septal myectomy, although still recovering. I feel I wasted time. I was very sick on camzyos.

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I’m sorry to hear that you feel you wasted your time. I was hoping it would help as apparently it’s a magic pill for some.
I try to think of it as part of my journey.
❤️‍🩹

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avcowie | @avcowie | Sep 14, 2023
In reply to @quinn "Please write again on this thread after your surgery. Would love to know how things went..." + (show)
@quinn

Please write again on this thread after your surgery. Would love to know how things went for you. May I ask how old you are and if you are an NYA class 3 or 4? Best of luck that you are scheduled before the holidays!

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I am 56. I’ll write an update after surgery. Please define what an NYA is and what the classification means. I don’t know much of the jargon.

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1 reply
dbrima | @dbrima | Sep 14, 2023
In reply to @avcowie "I am in month 4 of trying Camzyos. It seems to have a negative effect on..." + (show)
@avcowie

I am in month 4 of trying Camzyos. It seems to have a negative effect on exertion symptoms - the recovery is longer and symptoms come on abruptly. I have asked my cardiologist if I can stop taking it as I feel no benefit. Now waiting to hear from the prescribing cardiologist to stop and go back to Rythmodan. On the bright side during that same conversation Dr Ong is going to co-ordinate my surgery for septal myectomy and mitral valve repair. Fingers crossed it happens before Christmas 🤞🤞

Jump to this post

I, too, had no benefit. I took obit for 8 months and had a septal myectomy 6 weeks ago. I feel better after the septal myectomy, although still recovering. I feel I wasted time. I was very sick on camzyos.

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1 reply
quinn | @quinn | Sep 13, 2023
In reply to @avcowie "I am in month 4 of trying Camzyos. It seems to have a negative effect on..." + (show)
@avcowie

I am in month 4 of trying Camzyos. It seems to have a negative effect on exertion symptoms - the recovery is longer and symptoms come on abruptly. I have asked my cardiologist if I can stop taking it as I feel no benefit. Now waiting to hear from the prescribing cardiologist to stop and go back to Rythmodan. On the bright side during that same conversation Dr Ong is going to co-ordinate my surgery for septal myectomy and mitral valve repair. Fingers crossed it happens before Christmas 🤞🤞

Jump to this post

Please write again on this thread after your surgery. Would love to know how things went for you. May I ask how old you are and if you are an NYA class 3 or 4? Best of luck that you are scheduled before the holidays!

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1 reply
quinn | @quinn | Sep 13, 2023
In reply to @avcowie "Update I stopped taking Camzyos 5 days ago since I was feeling even more tired and..." + (show)
@avcowie

Update
I stopped taking Camzyos 5 days ago since I was feeling even more tired and anxious on it. Today I feel better, just a bit more general muscle tightness and soreness than usual. My blood pressure medication is helping my heart stay as healthy as possible until the Camzyos is out of my system. Up to 30 days is what I read. Is that correct?

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Yes, 30 days for it to be gone from your body. Camzyos has a two-week half-life. My understanding is that the other two weeks will be enough time for the other half to be washed out.

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KEITH | @manning2000 | Sep 12, 2023
In reply to @newtosohcm "I was told my co-pay would be over $3500/month. Obviously I cannot afford that. I have..." + (show)
@newtosohcm

I was told my co-pay would be over $3500/month. Obviously I cannot afford that. I have received 30 days free for a trial and another 2 months on a grant and will be seeking financial assistance to get ready for the future. I’m very glad you managed to get the affordable co-pay.

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My Dr. Was helpful by talking to pharmacy & Ins Co. On my behalf. I took Camyzos for 5 mos. I was rediagnosed with Amylodosis by a different Dr. I am now on Vyndamax. In my case; and in my opinion my Drs. took too long to find the problem before I was properly treated. Good luck & God’s blessings.

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