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!

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

dwc62 | @dwc62 | Dec 1, 2023

In reply to @lakehappy "Hello All, I had my echo today and my gradient went from 71 to 29. Very..." + (show)

That's great news, hopefully I will have my results Monday I did not me with my doctor.

lakehappy | @lakehappy | Dec 1, 2023

Hello All, I had my echo today and my gradient went from 71 to 29. Very happy to hear that drug is having an impact. Hoping my shortness of breath improves soon.
Hope @dwc62 has some good news too.

lakehappy | @lakehappy | Nov 29, 2023

In reply to @karukgirl "Well @dwc62, you and and @lakehappy are both in the same boat it sounds like. I'm..." + (show)

I'm not scheduled to see the Doctor until January.

Debra, Volunteer Mentor | @karukgirl | Nov 29, 2023

In reply to @dwc62 "Hi Lakehappy, I am in the same position as you , no side effects, no benefits..." + (show)

Well @dwc62, you and and @lakehappy are both in the same boat it sounds like. I'm glad you are both able to share this with the Camzyos group and offer support to each other. Will you let us know what you learn after your test?

Debra, Volunteer Mentor | @karukgirl | Nov 29, 2023

In reply to @lakehappy "I've been on the medicine for 1 month. Thankfully no side effects but haven't noticed any..." + (show)

I hope your echo shows improvement @lakehappy. It must be puzzling to be on Camzyos for a month and not notice any change in symptoms. I would have a hard time being patient, so good for you! Is your cardiologist going to let you know right away after they see the echo?

susanml | @susanml | Nov 29, 2023

Hi all. Has anyone noticed a queasy stomach while on Camzyos? Been on it 10 days and this is the only side effect.

dwc62 | @dwc62 | Nov 28, 2023

Hi Lakehappy, I am in the same position as you , no side effects, no benefits and going for my scan on Thursday.

lakehappy | @lakehappy | Nov 28, 2023

I've been on the medicine for 1 month. Thankfully no side effects but haven't noticed any change in symptoms. I have my appointment tomorrow for scan and hopefully there will be some change. I'm being patient as many of you have said it takes awhile. Here's hoping.

nbs | @nbs | Nov 18, 2023

In reply to @markmayo "I'm fixin to start Camzyos soon so they did an echo yesterday. The nurse went out..." + (show)

Please let us know what your doctor says. I was told it is not a cure but a remedy.

dwc62 | @dwc62 | Nov 17, 2023

In reply to @susanml "Have started Camzyos today. Here’s hoping that I get good results. The team here in Canada..." + (show)

Good Luck, I am also from Canada and yes the team was very helpful.

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