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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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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Profile picture for HansJ @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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Profile picture for kelliw @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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Profile picture for @Waqar @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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Profile picture for kelliw @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! 🙂

Jump to this post

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.

REPLY
Profile picture for @Waqar @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.

Jump to this post

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! 🙂

REPLY

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.

REPLY
Profile picture for HansJ @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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Profile picture for HansJ @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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That’s great news! I’m having the same success! I started the same time you did! 😊

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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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