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

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Profile picture for dwc62 @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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Profile picture for manuelpo @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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Profile picture for dwc62 @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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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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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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Profile picture for hollywood50 @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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Profile picture for hollywood50 @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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Yes, HCM is genetic. In 9/2022 I was tested - none of the 123 genes known to cause HCM at that time was mutated. I was told to recheck in about 5 years because new HCM genes may be discovered. Meanwhile, my son and grandson (aged 46 and 12 at the time), did have echocardiograms out of an abundance of caution. My cardiologist advised me to tell them to have that done about every 5 years. Until the genetics are conclusive and we can pinpoint the gene to study, it's a proactive plan. I was in my late 50's/early 60's when I was diagnosed.

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Profile picture for stayhealthy2 @stayhealthy2

I too am delighted with less symptoms after taking Camzyos for 1 1/2 months. After less than a week, initially, I had noticeable improvement.

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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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Profile picture for captainterry @captainterry

Jess: I am a 73 year old male with a long standing diagnosis of Obstructive HCM. Over time my HCM progressed and I experienced the expected symptoms and clinical data of progressive heart failure. I am otherwise in generally good health, but my heart condition required significant and frustrating adjustments to my activities of daily living.
GOOD NEWS! I began Camzyos in May 2022. After three daily 5mg doses all symptoms were gone. I thought it was psychosomatic! Now after 7 months all is still excellent and after a couple of months the dosage was reduced to 2.5mg daily. I have been under a very strict protocol of monitoring and testing (MD visits, echos, and EKG).
Camzyos does not work for everyone and might he dangerous for some. But it is worth a try under expert supervision and careful follow up.
Camzyos has been a life changer for me! I can only thank God, my cardiology specialist in HCM, and his team in Memphis, Tn. And, the increadible brains that invented this new drug!
Peace!

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I too am delighted with less symptoms after taking Camzyos for 1 1/2 months. After less than a week, initially, I had noticeable improvement.

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