Anyone take new drug Camzyos (mavacamten) for HCM?

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.

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!

That’s great news! I’m having the same success! I started the same time you did! 😊

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.

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. 🙂

How is your treatment going?

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

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. 🙂

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

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 !