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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jess51 | @jess51 | Apr 15, 2023
In reply to @hansj "Hi All, I thought I'd chime in on this topic. I'm from Vancouver Canada and just..." + (show)
@hansj

Hi All, I thought I'd chime in on this topic. I'm from Vancouver Canada and just started on Camzyos March 31st. It's been almost 2 weeks and no side effects that I've noticed, and the upside is that I already feel better and able to walk significantly further without needing to stop to catch my breath.

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Hello from Victoria! I am 2 months plus into Camzyos and it continues to be very beneficial. I have had 2 ECGs since I started and I guess all looks fine as my dose of 5mgs has been maintained. I am happy to hear that you are also benefitting. Such a nice change!

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@Waqar | @waqarsaeed | Apr 20, 2023

Hi I am 58 years old from Calgary, have HCM for over a decade, I followed this medicine trial and results over the past two years and my cardiologist put me on Mavacampten last week, so far no side effects at all and breathing improved very well, it's been a while since I felt comfortable walking. I could not walk a block without taking a break. I wish Camzyos be beneficial for everyone using it.

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kelliw | @kelliw | Apr 20, 2023
In reply to @waqarsaeed "Hi I am 58 years old from Calgary, have HCM for over a decade, I followed..." + (show)
@waqarsaeed

Hi I am 58 years old from Calgary, have HCM for over a decade, I followed this medicine trial and results over the past two years and my cardiologist put me on Mavacampten last week, so far no side effects at all and breathing improved very well, it's been a while since I felt comfortable walking. I could not walk a block without taking a break. I wish Camzyos be beneficial for everyone using it.

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Hi! I am also 58 and was having your exact trouble. I started 3 weeks ago and cannot believe how good I feel! I am now able to walk too! I feel like I am getting my life back! I am having my first ECG next Friday. I am so thankful for this medication and the ability to help so many people! 🙂

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2 replies
@Waqar | @waqarsaeed | Apr 21, 2023
In reply to @kelliw "Hi! I am also 58 and was having your exact trouble. I started 3 weeks ago..." + (show)
@kelliw

Hi! I am also 58 and was having your exact trouble. I started 3 weeks ago and cannot believe how good I feel! I am now able to walk too! I feel like I am getting my life back! I am having my first ECG next Friday. I am so thankful for this medication and the ability to help so many people! 🙂

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Absolutely it is a step forward, my cardiologist gave me an option of open Heart surgery but I opted for this medicine to try in first place. In three weeks I will have my first ECG. In the long run if LVOT gradient ratio improves and Regurgitation disappears then I will be considering myself lucky that I started taking Camzyos.

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1 reply
kelliw | @kelliw | Apr 21, 2023
In reply to @waqarsaeed "Absolutely it is a step forward, my cardiologist gave me an option of open Heart surgery..." + (show)
@waqarsaeed

Absolutely it is a step forward, my cardiologist gave me an option of open Heart surgery but I opted for this medicine to try in first place. In three weeks I will have my first ECG. In the long run if LVOT gradient ratio improves and Regurgitation disappears then I will be considering myself lucky that I started taking Camzyos.

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Good morning-I have been feeling so great-but then yesterday I got really dizzy and felt like I was going to faint. I am a teacher and this happened in my classroom. The nurse came and had me lay down on the floor with my feet on a chair. My blood pressure was a bit low, but then went up when I sat up. I still feel a bit dizzy today. I hope it stops soon! This is my 22nd day.

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HansJ | @hansj | Apr 21, 2023
In reply to @kelliw "Hi! I am also 58 and was having your exact trouble. I started 3 weeks ago..." + (show)
@kelliw

Hi! I am also 58 and was having your exact trouble. I started 3 weeks ago and cannot believe how good I feel! I am now able to walk too! I feel like I am getting my life back! I am having my first ECG next Friday. I am so thankful for this medication and the ability to help so many people! 🙂

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You and I are on the same schedule. My 1st Echo since starting this drug is also next friday. I'm feeling great, so I'm sure it will be fine.

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1 reply
kelliw | @kelliw | Apr 21, 2023
In reply to @hansj "You and I are on the same schedule. My 1st Echo since starting this drug is..." + (show)
@hansj

You and I are on the same schedule. My 1st Echo since starting this drug is also next friday. I'm feeling great, so I'm sure it will be fine.

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I am feeling good today. 🙂

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kelliw | @kelliw | Apr 23, 2023

Good morning! My husband and I just walked 2 1/2 miles, and I didn't have to stop at all! I feel so good-Like normal! I am soooo thankful that Camzyos is working. I feel like I am getting my life back! 🙂

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1 reply
jess51 | @jess51 | Apr 24, 2023
In reply to @kelliw "Good morning! My husband and I just walked 2 1/2 miles, and I didn't have to..." + (show)
@kelliw

Good morning! My husband and I just walked 2 1/2 miles, and I didn't have to stop at all! I feel so good-Like normal! I am soooo thankful that Camzyos is working. I feel like I am getting my life back! 🙂

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This is such good news! I just saw my cardiologist today and came away feeling very lucky. Some of his Camzyos patients are not getting noticeable results - he feels that I am really fortunate that I am doing so well on this medication. Nice to read your updates Kelli 🙂

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starbuck41 | @starbuck41 | Apr 27, 2023

Hello
I am a 59yr old male 6’4 260lbs, I am going to be the first veteran in America to get this drug through the VA, many cardiology departments across the globe are watching my case to evaluate and establish for other veterans. I’ve seen war, but the warnings on the packaging is making me nervous. Any advice?
D

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