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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neymil | @neymil | Apr 23 7:29pm

In reply to @mckenzie541 "Hello all, my name is McKenzie. I am 25 years old and live in the US...." + (show)

You may have discovered this already, buy robotic surgery is available which does not require cutting open the chest !

katiekins | @katiekins | Apr 24 5:15am

In reply to @neymil "You may have discovered this already, buy robotic surgery is available which does not require cutting..." + (show)

Is this available in the UK? Seeing the cardiologist tomorrow! Thanks for that reply.

neymil | @neymil | Apr 24 6:21am

In reply to @katiekins "Is this available in the UK? Seeing the cardiologist tomorrow! Thanks for that reply." + (show)

I'm not sure about UK....ask your Doctor about robotic surgery as an option...

katiekins | @katiekins | Apr 24 6:51am

In reply to @neymil "I'm not sure about UK....ask your Doctor about robotic surgery as an option..." + (show)

Thanks for the quick reply.....my cardiologist keeps talking about minimally invasive surgery. In other words a 3/5 inch cut down the middle, not as previously done breaking the breast bone! Might have to fly to The States....cant find a thing anywhere saying robotic in the UK. Oh how I wish Camzyos had worked for me. It apparently works better (as I have mentioned on here before) for patients who have inherited HOCM, mine is not therefore didn't work sadly.

neymil | @neymil | Apr 24 7:01am

Sorry to hear the medication was not effective...I haven't started mine yet, I'm still contemplating surgery....if you can have minimal invasive surgery performed without cutting the bone that's a blessing for sure !

katiekins | @katiekins | Apr 24 7:39am

In reply to @neymil "Sorry to hear the medication was not effective...I haven't started mine yet, I'm still contemplating surgery....if..." + (show)

Yes sad it didn't work for me. If yours is inherited then a good chance it will work! I can't figure out what is minimally invasive and what is robotic what's the difference? Any clues? My feeling is robotic is in the States (not here yet) and minimally invasive is in the UK but still a scar. Are you young? Sorry to ask. Thanks for replying as most people don't understand.

neymil | @neymil | Apr 24 7:45am

In reply to @katiekins "Yes sad it didn't work for me. If yours is inherited then a good chance it..." + (show)

I'm 53...mine was inherited. Robotic surgery accesses the heart through several incisions on the left side just under the armpit....

katiekins | @katiekins | Apr 24 8:34am

In reply to @neymil "I'm 53...mine was inherited. Robotic surgery accesses the heart through several incisions on the left side..." + (show)

Goodness me such a quick reply...thank you. So young then...Ok I understand a bit more now. I think the surgeon wants to minimally cut down the middle to repair the mitral valve as well which may or may not need doing. I suggested doing the thickening first (round 1.6/1.7 mm to which he said if the mitral valve needs doing too we will have to go in twice. I am on verapamil 80mgs at night and 40mgs am plus 3 mgs prednisolone for aches. What are you on if any? I am getting out of breath after eating and better on after lunchtime. How about you? Sorry for all the questions a big decision coming.

neymil | @neymil | Apr 24 9:48am

In reply to @katiekins "Goodness me such a quick reply...thank you. So young then...Ok I understand a bit more now...." + (show)

I'm not taking any medication currently except high blood pressure medication. I am scheduled for an Echo. And then soon to go on camzyos. My situation is not as severe as yours, but will progress. I am considering surgery If it's done with robotics.

katiekins | @katiekins | Apr 24 11:30am

In reply to @neymil "I'm not taking any medication currently except high blood pressure medication. I am scheduled for an..." + (show)

I have had this 15 yrs and a mild case they say but of course will progress so better late than never. Camzyos could be a game changer for you if yours is inherited. Your call. I am only on calcium channel blockers which essentially are for high blood pressure. Thanks for replying.