Anyone take new drug Camzyos (mavacamten) for HCM?

Hi ! I saw Dr. Rowin. I have done 1 month on 5mg. First echo results were so good, they dropped me to 2.5mg. Second echo #s were such that I STAYED on 2.5mg, even though I had a gut feeling I should be on 5mg. Had 3rd echo and results were still really good, but in the range such that I could go back to 5mg. Just started that dosage Dec. 22. No extreme changes in symptoms yet, but I feel like I have to give the 5mg a multi month test first. Again, my symptoms weren't too bad to begin with. The doctors have stated that they think I'll never be on 10mg due to the fact that I am a "super responder" to Camzyos. That analysis was based on my gradients being reduced by nearly 2/3 during the first 30 days !

Per the article I found this:
"A normal ejection fraction is 50% to 70%. This means that between 50% and 70% of the blood in the heart is pumped out with each heartbeat. When that number falls, especially below 40%, it can indicate a significant problem with the heart muscle. Learn more about ejection fraction."
I know before I had my septal myectomy my EF was 76%, which is high. 79% is very high too! It means your heart is working hard to keep your EF up.
Hope this helps!

Thank you Debra. I did read the article but found no mention of percentages. My % was 79 before going on to Camzyos. Would like to know what that measures and what is ‘normal’. Thanks again.

Hi there @susanml, I did a little internet research and found this:
https://www.heart.org/en/health-topics/heart-valve-problems-and-disease/about-heart-valves/heart-valve-terms-and-related-conditions
Is this what you were looking for?

You're welcome. I don't blame you being in dilemma about this. Any surgery is stressful, and knowing how HOCM is would make it even more stressful. You need to trust the surgical team and have faith...the hospital I where I had my hysterectomy has great doctors and nurses. I was a little thrown off by Dr. Anesthesiologist telling me I could die. That was not fun! But I truly feel no matter where you have your knee surgery, the medical team would not go forward if it was unsafe.

Good day. Could someone explain to me what the gradient readings represent?
Many thanks. Be well

Thank you for sharing your experience. I’m hoping the anesthesia team at UCSF will be better equipped to deal with any cardiac issues that might arise while I’m under anesthesia having knee surgery than at my local rural hospital. It’s just so hard to make these important decisions without adequate information i.e. risks vs benefits of having surgery 20 minutes from home vs 275 miles from home (without lodging or transportation!)
But, I’m very glad you had a good outcome!

Welcome to the Camzyos group on Mayo Connect @eltorro75. You posted in March that Camzyos was not available in Europe yet. I'm glad to hear you are now able to begin this treatment. There is a lot of information in this group, have you had a chance to read some of the posts?
Here is one talking about beta blockers and Camzyos. https://connect.mayoclinic.org/comment/886468/

@kelliw has had some experience with this and she shares her ups and downs with the group. @jaymaysea has also shared their story, each with a positive, honest perspective.
Reach out, we are here for you! Fear of surgery is real, but life is full of choices and risks. Is your cardiologist educated on HOCM?

Welcome to Mayo Connect @ladyrery! I'm glad you found this group. You are in good company here, this group is amazing, brave, strong and willing to share the ups and downs of Camzyos. I am happy to hear you are doing so well. It must be thrilling to feel so much better now. How long ago were you diagnosed? Is your cardiologist up-to-date with all things HCM/HOCM?

Hi there @newtosochm, you ask a valid question.
I can share my experience with you. I had been misdiagnosed by my cardiologist with four different heart conditions before finally being diagnosed with HCOM in 2019. In 2015, I had to have a hysterectomy. I was in a really bad way and it was more than necessary. My doctor had me in for a pre-op visit. She listened to my heart and literally pushed herself away on her little rolly chair and exclaimed in shock there was no way I could have surgery. I had told her I have a mitral valve prolapse and a murmur. She said no anesthesiologist in town would put me under with a heart that sounded like that. My surgery was the next day. She made me go to my cardiologist and get a letter stating I was ok for surgery. I did.
The next day, in the hospital, the anesthesiologist came to my room for a pre-op visit. He told me he could not put me under, my EF and gradient numbers were terrible and I could die!
To say I was frightened is an understatement. My parents were sitting there with me and my mom was freaked out.
He told me he wanted to talk to Dr. Cardiologist first.
Then about 20 minutes later he came back and said Dr. Cardiologist told him I would be fine, just keep me super hydrated and that was it. Dr. Anesthesiologist wanted to err on the side of caution and he put in an arterial line to make him feel better.
I did fine! I had zero problems. And all this is before they even knew what I really had. I hope this helps you face your total knee with a little confidence. I share this to let you know that the medical team taking care of you will have the information they need to keep you safe. They would not operate on you if it was not safe. And I am far from a COE hospital too. UCSF is four hours from where I live. I hope this help you!