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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kelliw | @kelliw | Apr 1, 2023
In reply to @klima12 "Hello, I am finally starting on Tuesday. I’m pretty excited. I have tried to read everything..." + (show)
@klima12

Hello,
I am finally starting on Tuesday. I’m pretty excited. I have tried to read everything I can find about this drug. But I am hoping someone could fill me in on the information they have received. Does the medication reverse the disease? Are we on it for life? Any information would help. Thank you.

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That is so exciting! I just took my 3rd pill and feel great! No side effects so far! I would love to know the answers to your questions too!

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kelliw | @kelliw | Apr 2, 2023
In reply to @jess51 "Hello - I'm from B.C. here in Canada - I am about 6 weeks into my..." + (show)
@jess51

Hello - I'm from B.C. here in Canada - I am about 6 weeks into my Camzyos treatment. My Cardiologist got the ball rolling for me. I am eligible for "fair pharma care" (thouh I am not certain that they are covering yet) and have the minimal health coverage plan through Manulife. I was contacted initially by rep from Bay Shore pharmacy out of Quebec. Questions were asked, forms were filled, echos done etc. I get one month supply shipped by courier to me from Bay Shore pharmacy in Vancouver (I am in Victoria) It is fully cover at present. I don't know if this extra information is of use to anyone but perhaps it will help. Good luck all - I have had really good results!!
Kelli - I am so happy that you are on your way

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Good morning Jess-I was wondering when you felt you were able to start taking walks again? I have been feeling great so far. When did you experience the leg tingling and nausea? Was it the first couple of days or further in? I feel a little dizzy right now. I know that is normal they say...
Thank you!

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1 reply
jess51 | @jess51 | Apr 2, 2023
In reply to @kelliw "Good morning Jess-I was wondering when you felt you were able to start taking walks again?..." + (show)
@kelliw

Good morning Jess-I was wondering when you felt you were able to start taking walks again? I have been feeling great so far. When did you experience the leg tingling and nausea? Was it the first couple of days or further in? I feel a little dizzy right now. I know that is normal they say...
Thank you!

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Hello Kelli -

My side effects were, fortunately, only in the first few days. I was so relieved when they disappeared - nausea can be something that is not easy to adjust to! I didn't experience any dizziness above and beyond what I experience occasionally with my low blood pressure... I am experiencing NO side effects now which is wonderful. I have tried to stay with daily walks pretty continually (even before) but I felt a real difference in my breathing pretty quickly - (within just a few days) and have started an exercise class for seniors. No cardio in this class but enough movement to note an improvement for certain. This has really lifted my spirits. I have no idea whether Camzyos has any effect on the further advancement of HCP - big question for my Doctor! I suspect not but I am interested in how this will continue to help over time, depending on how advanced one's condition is. ...Always lots of questions !

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1 reply
kelliw | @kelliw | Apr 2, 2023
In reply to @jess51 "Hello Kelli - My side effects were, fortunately, only in the first few days. I was..." + (show)
@jess51

Hello Kelli -

My side effects were, fortunately, only in the first few days. I was so relieved when they disappeared - nausea can be something that is not easy to adjust to! I didn't experience any dizziness above and beyond what I experience occasionally with my low blood pressure... I am experiencing NO side effects now which is wonderful. I have tried to stay with daily walks pretty continually (even before) but I felt a real difference in my breathing pretty quickly - (within just a few days) and have started an exercise class for seniors. No cardio in this class but enough movement to note an improvement for certain. This has really lifted my spirits. I have no idea whether Camzyos has any effect on the further advancement of HCP - big question for my Doctor! I suspect not but I am interested in how this will continue to help over time, depending on how advanced one's condition is. ...Always lots of questions !

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Thank you! That is all very helpful! I'm feeling good! 🙂 Will try a walk tomorrow...

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kelliw | @kelliw | Apr 7, 2023

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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klima12 | @klima12 | Apr 8, 2023

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

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klima12 | @klima12 | Apr 8, 2023
In reply to @kelliw "I am receiving Camzyos tomorrow! I will take my first pill tomorrow and then Thursday morning..." + (show)
@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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1 reply
kelliw | @kelliw | Apr 8, 2023
In reply to @klima12 "How is your treatment going?" + (show)
@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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HansJ | @hansj | Apr 12, 2023

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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2 replies
kelliw | @kelliw | 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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That’s great news! I’m having the same success! I started the same time you did! 😊

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