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

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@jaymaysea

Welcome to the Family boatsforlife! I think you will find this is an amazing group that will support you in your journey. I came to the group when I was trying to decide whether or not to take Camzyos. It is because of the comments from the people here — factual and spiritual — that I decided to move forward.

My journey with Camzyos, in terms of results, has not been as life transformative as some of the others here. I have been taking it 111 days today; 3.5 months. I still experience shortness of breath upon exertion, but not as badly as before. Now, my heart rate is often high even when I am sleeping, which did not occur before I took the medicine. My cardologist insists that it’s not because of Camzyos. I still experience angina occasionally.

My cardologist is a divo. His word, I refer to his as a rockstar, because after years of being misdiagnosed he found the problem and prescribed Camzyos. But, I have had to battle with him a couple of times. He dropped me from 5mg to 2.5mg after the first month because he said the algorithm said he had to do so. But, because of information I learned here I knew that was not the case. He still dropped me; but, after reminding him that MY obstruction was negligible during rest but through the roof during exertion, he agreed to another stress echo rather than the limited ego that is done during the first 4 months on the drug. The result, he took me back to 5 mg. The morale of this story is that YOU have to be your best advocate, YOU are not an algorithm!

Also, make sure you know what you cannot take and can take with Camzyos; many things are counter indicated. Things you might not think of like grapefruit and some allergy meds.

Bottom line: This drug is not for everyone; people respond differently. So, be diligent, ask questions, listen to your body, have faith, and stay positive!

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Replies to "Welcome to the Family boatsforlife! I think you will find this is an amazing group that..."

Great response @jaymaysea! Thank you for sharing that...it's not all sunshine and roses, and you and some others have had a rough road to travel on. Thanks for letting @boatsforlife know how important it is to be your own advocate too. And the drug interactions! That's important. I was like you...little gradient at rest, huge under stress/exertion. If you didn't push for yourself and let your doctor follow protocol, then who knows where you would be right now. People are unique and different, they are not algorithms like you so eloquently stated! I hope you get continued improvement. When is your next echo?

Hey @jaymaysea thanks for the encouragement. I'm way behind your curve at just 14 days now. After just a few days I felt like I was improving but figured it was all in my head. At day 9 I accidentally did 3 flights of stairs in rapid succession and felt ... NOTHING. No chest pain. No dizziness. No heart pounding. No shortness of breath. Just nothing. Previously a single flight of stairs would just about kill me. From day 9-12 it was the same. Not one of my normal symptoms. It was almost confusing not knowing what I should do at the top of stairs or whenever I would usually have to stop and wait for things to subside. But the last 2 days have been a little bit of a setback. I've felt a little bit of what I'm used to feeling. Nothing at all like it has been for the last many years, but not quite as great as the previous few days. I'm not worried about it (much) as it's still very early days. To be honest, I wasn't expecting to detect any positive change for a couple months, so this is all a bonus even with the tiny step backward. My first 4-week echo is scheduled for 23 Oct. @jaymaysea, I'll keep in mind what you said about advocating for a stress echo should that become a thing. Like you, my problem is under exertion, not at rest. I'll post again in a week or two or if I have a significant change.