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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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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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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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.

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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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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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Profile picture for klima12 @klima12

How is your treatment going?

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Good morning! I am really feeling good! My shortness of breath is gone! I was able to go on 2 walks-Wednesday for 30 minutes, with no shortness of breath or wheezing. I felt good when I got home too. It has been so long since I have been able to take a walk! Thursday I went again, by myself this time and I took my dog. Not so good that day-he kept pulling on the leash and it was too much for me. I started to feel a bit winded, so went back to the car after about 20 minutes. I won't take him again! I am going to try to play pickle ball this afternoon! We will see how that goes... I really hope you start to feel a difference soon! Thank you for checking in. 🙂

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Profile picture for kelliw @kelliw

I am receiving Camzyos tomorrow! I will take my first pill tomorrow and then Thursday morning and every morning! Yay! I will let you know how I feel. I'm praying this works!! 🙂

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How is your treatment going?

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That is great to hear. I am on day 4 and haven’t noticed any difference as of yet.

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Happy Friday! I am on my 8th day of Camzyos and I feel sooo great! I have been able to walk for 30 minutes Wednesday and yesterday, without feeling short of breath or wheezing. It is incredible how quickly this is working for me! My pulmonologist, yesterday, was amazed at how clear my lungs sounded. Just wanted to give an update. I would love to hear other success stories. 🙂

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