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

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@nanakpm

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!

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Replies to "Thanks for sharing your symptoms, and asking the question. I have had the opposite experience to..."

Thank you so much for your comments. Where did you order the CYP test from as the results would be very interesting? My gradient dropped from over 100 to 19 after one month on 5mg of mavacamten. I was decreased to 2.5mg and have sustained my low gradient at 17 after month 2. I have had “known” HCM for over 10 years and had been relatively asymptomatic on metoprolol (with a gradient of 30). However, this year (a few months after I acquired Covid) my gradient and symptoms (SOB and fatigue which is new) increased significantly. Now I wonder if I have long covid instead since my gradient is so low and I’m still symptomatic?? I will stay the course for a few more months and hope more improvement is to come. I agree, we have to be our own advocate and so much more research is needed for HCM.