1. < Hypertrophic Cardiomyopathy (HCM)

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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kelliw | @kelliw | Jun 20 10:08am
In reply to @hollywood50 "Hi jess. I am 69 years old. I am pretty sure this was hereditary. I did..." + (show)
@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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kelliw | @kelliw | Jun 20 10:12am

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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dwc62 | @dwc62 | Jun 20 10:33pm

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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1 reply
manuelpo | @manuelpo | Jun 21 8:24am
In reply to @dwc62 "Like I mentioned I had major back surgery in January, I was under 3-4 hours I..." + (show)
@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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1 reply
dwc62 | @dwc62 | Jun 22 12:44am
In reply to @manuelpo "Hi @dwc62. Thank you for sharing that information. Do you know the name of the anesthesia..." + (show)
@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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1 reply
manuelpo | @manuelpo | Jun 22 2:38pm
In reply to @dwc62 "I just read my surgery report and the Anesthesiologist just called it General Anesthesia. I hope..." + (show)
@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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