← Return to Anyone take new drug Camzyos (mavacamten) for HCM?

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@andyherman3

You are the first post I have read that had your dose lowered after the first echo…me too. Since our gradients went below 20, the recommendation is to lower the dose. I hear we are called “rapid responders” and we may be metabolizing the medication differently. I am however disappointed that I don’t feel my symptoms have improved much. My fatigue and shortness of breath while climbing stairs has not changed much. Does anyone know if improvement in symptoms can lag behind the improvement of our cardiac numbers?

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Replies to "You are the first post I have read that had your dose lowered after the first..."

Hello @andyherman3, and a BIG Welcome to Mayo Connect. Thank you for sharing your experience on Camzyos. It's interesting, but not strange, that each person will react differently to the same drug. I don't blame you for being disappointed your symptoms seem to have not changed much. Have you read some of the other members stories? @kelliw and @jaymaysea are both on Camzyos and each has had a different experience, and they both are champions for being their own advocate. When do you see your cardiologist again? Are they experienced with HOCM and how Camzyos works?

Thanks for sharing your symptoms, and asking the question.

I have had the opposite experience to you - my symptoms improved within a few days, and continued to improve after several months on mavacamten. I no longer need to nap during the day, and can walk without angina, and go up the stairs in my three storey house. I had to advocate to go on a higher dose, and am now on the highest dose of 15mg. But my gradient did not budge and my doctor said she was "disappointed." Gradient was very high at 150, then 139, and 6 weeks ago 117. She said this was irrelevant and that the drug is not working. But clinically I have way more energy than I used to have. I recently ordered a CYP test for drug metabolism. It includes mavacamten, and I learned that in Europe and Asia, this test is done before deciding dosage. It is not done in North America. You can purchase it privately for about $600.

My experience is that I have to be my own advocate, do the research, and seek other professional opinions. It is uncomfortable to hear different opinions from different doctors, and to be on the cusp of a paradigm shift in the treatment of HOCM. One of the other shifts happening is understanding the role of the gradient. I don't know enough about it, but have been told that there is debate. Sigh.

Good luck to all of us!