Anyone take new drug Camzyos (mavacamten) for HCM?

Posted by captainterry @captainterry, May 25, 2022

Since FDA approval in April has anyone (non-clinical trial patient) actually obtained a prescription and had it filled? If so, when and where was the cardiologist located? Is the registration process for doctor/patient/Rx taking a long time for this much anticipated drug?
Thanks from a fellow patient!

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@hollywood50

Hi jess. I am 69 years old. I am pretty sure this was hereditary. I did take genetic testing, To see if we could pinpoint the gene. But they could not pinpoint it. I have two sons one suns bent tested negative for it. My other son has not gone yet. Do you know if yours was genetic?

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Good morning! My dad has HCM and I inherited it, but my brother didn't. My dad has a very mild case, I unfortunately have a severe case and needed Camzyos. I am so very thankful I have my life back, since starting Camzyos in March 2023!

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Good morning-I had asked if anyone has had surgery, while on Camzyos, and how it worked with the anesthesia. I had my cardiac clearance appointment on Monday and got the clearance for my foot surgery, in July. He looked up the anesthesia they usually use-Propofol, and it said there was an interaction with Camzyos, so he is calling the head anesthesiologist at our hospital to see what else they can use. I am a bit nervous-but he said I will be fine. I also need to call the specialty pharmacist about all of this and whatever pain meds they prescribe for afterwards.

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Like I mentioned I had major back surgery in January, I was under 3-4 hours I had no complication between the Camzyos and the anesthesia.

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@dwc62

Like I mentioned I had major back surgery in January, I was under 3-4 hours I had no complication between the Camzyos and the anesthesia.

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Hi @dwc62. Thank you for sharing that information.
Do you know the name of the anesthesia used in the surgery. I have pending 2 surgeries, 1 inguinal hernia and one on my right feet and I do not want any interaction with camzyos. Thank you.

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@manuelpo

Hi @dwc62. Thank you for sharing that information.
Do you know the name of the anesthesia used in the surgery. I have pending 2 surgeries, 1 inguinal hernia and one on my right feet and I do not want any interaction with camzyos. Thank you.

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I just read my surgery report and the Anesthesiologist just called it General Anesthesia. I hope this helps.

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@dwc62

I just read my surgery report and the Anesthesiologist just called it General Anesthesia. I hope this helps.

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Thank you!

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Hi ,anyone taking 7.5 mg ,two pills 5mg and 2.5 mg ?

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Hello everyone. I am not sure if I am posting my question correctly so please forgive me if I am not. I have been on Camzyos for 10days- 5mg. No improved symtoms so far. No side effects either. I have read here that some people feel better right away. have anyone, like me, experienced a longer delay for the drug to kick in? My first Eco after taking the drug is in about two weeks. I appreciate anyone's comments and thoughts. thank you very much.

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@manuelpo

Hi @dwc62. Thank you for sharing that information.
Do you know the name of the anesthesia used in the surgery. I have pending 2 surgeries, 1 inguinal hernia and one on my right feet and I do not want any interaction with camzyos. Thank you.

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Good morning! I had surgery on my foot last Thursday and everything went well! I was nervous about the anesthesia and Camzyos, but the doctors were all informed about me being on Camzyos, and there were no issues! My cardiologist contacted the director of anesthesiology at our local hospital, and he called me! I couldn't believe it! He said he read my doctor's report and they would be using the smallest amount of anesthesia they could and I would be fine. The anesthesiologist told me he was going to try using a sedative, but would go to general anesthesia if he needed to. He ended up needing to and I am fine. Yay! Good luck with your surgery! 🙂

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@kelliw

Good morning! I had surgery on my foot last Thursday and everything went well! I was nervous about the anesthesia and Camzyos, but the doctors were all informed about me being on Camzyos, and there were no issues! My cardiologist contacted the director of anesthesiology at our local hospital, and he called me! I couldn't believe it! He said he read my doctor's report and they would be using the smallest amount of anesthesia they could and I would be fine. The anesthesiologist told me he was going to try using a sedative, but would go to general anesthesia if he needed to. He ended up needing to and I am fine. Yay! Good luck with your surgery! 🙂

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Thank you!

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