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Anyone take new drug Camzyos (mavacamten) for HCM?
Hypertrophic Cardiomyopathy (HCM) | Last Active: Jun 22 2:38pm | Replies (736)Comment receiving replies
Good morning-I received a call from my cardiologist last night. He said the protocol is since my gradient numbers dropped below 20, and everything looks good, he has to back off the medication, so is dropping me from 5mg. to 2.5 mg. This makes me very nervous that I am going to start feeling like hell again. My gradient was at 21 for a long time, then jumped to 75!! That's when I started taking Camzyos. This last ECG showed the gradient was at 8!! I have only been on Camzyos for 60 days, and as you all know am feeling so good! My doctor said we will see how I feel with the lower dose and go from there. Ugh...maybe it is a good thing to take less of this, but we shall see. Has anyone else had this happen? If so, how do you feel now?
Replies to "Good morning-I received a call from my cardiologist last night. He said the protocol is since..."
@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!
Hi Kelli,
I just heard from the pharmacy this morning that my dosage is also being dropped to 2.5mg for the refill coming tomorrow.
I currently feel great and had an echo last friday and assumed I'd just be continuing with 5mg. I'm a little nervous about the drop in dose and hope it's still going to keep working for me. I have left message for the doctor to find out why it's being lowered. I certainly don't want to go back to feeling terrible and not being able to walk any distance.
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I think we will all be going through what you are. You are six weeks ahead of me. This drug is still in its infancy. Your doctor sounds on top of everything and thank you for keeping us posted.