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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tjunca | @tjunca | Nov 17, 2023
In reply to @markmayo "I'm fixin to start Camzyos soon so they did an echo yesterday. The nurse went out..." + (show)
@markmayo

I'm fixin to start Camzyos soon so they did an echo yesterday. The nurse went out and got the other nurse who did my previous echo to have her look at it. She tried a few things and they pulled up my previous echo. They didnt include me in the discussion but it seems like they couldnt find the obstruction this time. I have seen the valve leaflets folding back over the wrong outlet blocking flow at the end of pump for the last 12 years and while I was on mavacamten clinic trial for 6 months. When I asked them "Does that mean I'm cured?" they said my doctor would talk to me. Do you know if Camzyos is only prescribed for obstruction or if it can be used for ordinary HCM to help slow hard pumping or help reduce septum thickness?

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It is also prescribed to help reduce septal thickness

REPLY
susanml | @susanml | Nov 17, 2023

Have started Camzyos today. Here’s hoping that I get good results. The team here in Canada has been so helpful and supportive. Pharmacist had some concern about me taking Diltiazem but I’m not sure why.
All the best to everyone.

REPLY
2 replies
markmayo | @markmayo | 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)
@susanml

Have started Camzyos today. Here’s hoping that I get good results. The team here in Canada has been so helpful and supportive. Pharmacist had some concern about me taking Diltiazem but I’m not sure why.
All the best to everyone.

Jump to this post

When I signed up for clinic trial they shut off my dilti because I take metaprolol beta block. The trial signup sheet said "You are not allowed to take the following medications while in this study: .... combination of β-blockers and diltiazem are also not allowed".

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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)
@susanml

Have started Camzyos today. Here’s hoping that I get good results. The team here in Canada has been so helpful and supportive. Pharmacist had some concern about me taking Diltiazem but I’m not sure why.
All the best to everyone.

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

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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)
@markmayo

I'm fixin to start Camzyos soon so they did an echo yesterday. The nurse went out and got the other nurse who did my previous echo to have her look at it. She tried a few things and they pulled up my previous echo. They didnt include me in the discussion but it seems like they couldnt find the obstruction this time. I have seen the valve leaflets folding back over the wrong outlet blocking flow at the end of pump for the last 12 years and while I was on mavacamten clinic trial for 6 months. When I asked them "Does that mean I'm cured?" they said my doctor would talk to me. Do you know if Camzyos is only prescribed for obstruction or if it can be used for ordinary HCM to help slow hard pumping or help reduce septum thickness?

Jump to this post

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

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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.

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1 reply
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.

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1 reply
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.

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Mentor
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)
@lakehappy

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.

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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?

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Mentor
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)
@dwc62

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

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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?

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