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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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 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 22 11:28am

In reply to @dwc62 "Thank god you got off the Mavacamten, I have not had too many side effects (knock..." + (show)

Have you had any side effects at all? My cardiologist said to me that anyone with an inherited heart condition (i.e. HOCM) will fare better on Mavacamten. I don’t have the inherited type so maybe that’s why. Keep well my friend.

dwc62 | @dwc62 | Apr 22 10:51am

In reply to @katiekins "Thank you David for your comments. Yes I agree with you upon research but have had..." + (show)

Thank god you got off the Mavacamten, I have not had too many side effects (knock on wood).

katiekins | @katiekins | Apr 20 4:37am

In reply to @dwc62 "I was reading some information on HCM it stated Atrial Fib and HCM are connected. You..." + (show)

Thank you David for your comments. Yes I agree with you upon research but have had HOCM for around 15 yrs and pretty much symptom free (lately a few) but have never had Atrial fibrillation until I started Mavacamten (also a known side effect). I have had A F for around a month now and stopped Mavacamten about a month ago AF has stopped. Can only assume it’s the drug disappointingly. Very happy for those that have had their lives turned around. Regards

dwc62 | @dwc62 | Apr 19 10:38pm

In reply to @katiekins "Horrid drug for me since I started on Janaury 9th 2024, amazing first week then the..." + (show)

I was reading some information on HCM it stated Atrial Fib and HCM are connected. You may want to look into it.

David

nanakpm | @nanakpm | Apr 15 6:18pm

In reply to @peggynurse "great to hear. what is your current dose?" + (show)

I started at 5mg, increased to 10mg after a few months, and now on 15mg which is apparently the highest dose currently approved. I was told that if the gradient did not come down within 4 months, it wouldn't work. I asked to try the increased dose of 10mg and the gradient came down slightly. Much bigger drop in gradient on the 15 mg.
I did the pharmacogenetic test (through a private provider) which showed I am a rapid metabolizer of camzyos.

peggynurse | @peggynurse | Apr 15 5:11pm

In reply to @nanakpm "Hi. I’ve been on Camzyos for almost a year. So glad to hear from Karen317. I..." + (show)

great to hear.
what is your current dose?

manuelpo | @manuelpo | Apr 15 3:09pm

In reply to @nanakpm "Hi. I’ve been on Camzyos for almost a year. So glad to hear from Karen317. I..." + (show)

@nanakpm thank you for your advice for I was planning to do the same thing if I reach the same situation you have just increase the dosage and NO open heart surgery. My symptoms improved a lot but I do not know about my gradient till my first echo is done this coming 20th of April.
I do not mind even for maintenance be on camzyos for the rest of my life for it is worth it. My insurance covers that medicine even though that is an insurance I bought by myself and I do not work anymore for I took early retirement.

nanakpm | @nanakpm | Apr 15 7:56am

In reply to @mspope111 "Hi Karen, I am on month 2 of Camzyos. I went from 257 LVOT down to..." + (show)

Hi. I’ve been on Camzyos for almost a year. So glad to hear from Karen317. I felt better soon after starting Camzyos - more energy, less angina, fewer naps. But the LVOT gradient didn’t come down. My dr wanted me to stop Camzyos and have surgery. I persisted and asked to try higher dose instead. After 6 months the LVOT started to come down. I started on highest dose in November and by January the LVOT dropped from 119 to 58. By April this year it’s down to 7. I think some of us take longer to respond. If you’re feeling ok, stay with it! Great to hear about other people’s response. Thanks to all of you.