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Anyone take new drug Camzyos (mavacamten) for HCM?

Hypertrophic Cardiomyopathy (HCM) | Last Active: Sep 23 7:57am | Replies (770)
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@karukgirl

@kelliw, I hope you get a response from another member who has had their dose lowered. I wish I could add my experience, but since I can't I can perhaps say I don't blame you for worrying. Who would want to go back to where you were before? But your doctor sounds like he is following protocol which is what they are supposed to do. That's great that he called you too. It shows you are not falling thru the cracks. And, he is following you very closely, which should bring you some comfort. It sounds like a good thing to me to have the dosage lowered. Is it your understanding that if it works, and you feel fine at the new dose then it appears you are on the right course? Or if it doesn't work on the new dose, then it sounds like he will go back to 5mg? I like @jaymaysea's advice...Stay positive!

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Replies to "@kelliw, I hope you get a response from another member who has had their dose lowered...."
kelliw | @kelliw | May 28, 2023

Thank you Debra for your words of encouragement. My doctor is on it. I went for a walk yesterday with my husband and dog and towards the end felt really dizzy and like I was going to faint. He went and got the car and picked me up. I've been fine until yesterday. For some reason my blood pressure has been high since I was in my dr's office Thursday-really high yesterday-190/105. Luckily my dr. was on call. He said I didn't have to go to ER and he wants to put me on a BP medicine. He chose one, but then called me back to say he gave it a lot of thought and wants me to do the clonidine patch. I read about clonidine and the possible side effects are gnarly. Ugh-he said if I don't feel good I can take the patch off. I just have to trust that he knows what I need. I thought I was in smooth sailing zone and now all of this! But I am trying to stay positive. I still feel so much better than I did before! 🙂

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