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Anyone take new drug Camzyos (mavacamten) for HCM?
Hypertrophic Cardiomyopathy (HCM) | Last Active: 2 days ago | Replies (808)Comment receiving replies
Hello, my name is Mary. I just started my camzyos today was very nervous to start it because of the side effects. It are on the side effects but I have hyperopic cardiomyopathy found out a couple years ago. None of the medication has seem to work, so this is my last straw. If this doesn’t work, then I’ll have to have the open heart surgery.
Replies to "Hello, my name is Mary. I just started my camzyos today was very nervous to start..."
I have been on it for a little over 12 weeks. Be patient it took some time to see any results. Around 10 weeks for any significant change. My LVOT gradient went from 121 mmHg down to 3. Quite amazing. Let's hope it stays that way. Good luck and hang in there
Hi Mary, I am scheduled to receive my first 35 day supply today. So I will be starting probably Saturday. Yes, there is still some reluctance/procrastination; I want to get some blood work done before I start to give me a baseline.
I have really been afraid to take the drug. But, this group has been a godsend. It has provided first hand, unbiased information, and given me the comfort level to move forward. I hope it does the same for you. The drug is not for everyone. But, I pray it works for us.
Hello Mary/ @sunndyduke2, Welcome to Mayo Clinic Connect! You will be comforted by knowing there are many others, just like you, who have come here to find and share information about HCM, HOCM, and the new drug Camzyos. I had open heart surgery, so I have no experience with Camzyos. There is a whole new group here taking this drug, and they have shared their experiences with each other, and those who may be reading their post.
@nbs, @lgerding, and @jaymaysea are each correct in their encouragement and responses...it takes courage to try something new, without knowing what the results may be. Every drug has side effects that would scare folks into not even trying...so you have already made the brave decision to at least give it a shot. Good for you!
As mentioned, it is not for everyone, and I would tell you not to fear open heart surgery should you end up having to go that pathway. Anyone would fear it, of course, but the risks vs the benefits far out weigh not having it in the end. I hope you will come back and share your experiences with the Camzyos group. I think the one thing we all have in common is the wonderful feeling of getting your life back. HOCM takes away so much of what we can do, and when you get it back you realize how bad you were before surgery or Camzyos.
You mention you just started Camzyos today, when do you follow up with your cardiologist next? Is your cardiologist specialized in treating HOCM?
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Hi Mary,
We are all new to Camzyos and the unknown is unnerving. I hope it works for you. Speaking for myself (three weeks in) there have been no side effects and I have never felt this well in years. Although my obstruction was becoming debilitating, I found out that I would not qualify for heart surgery because the thickness of my septum wasn't thick enough to make surgery safe. So I wish the best for you and give it a bit of time. I think this site is comforting because we are a small group all in the same boat.