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!

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

isamac | @isamac | Aug 27 7:22am
In reply to @peggynurse "i’m curious about why you could not take Metroprol? I’m on Metoprolol XL 25 mg. twice..." + (show)
@peggynurse

i’m curious about why you could not take Metroprol?
I’m on Metoprolol XL 25 mg. twice a day.
The cardiologist wants me to go to once a day for two weeks and then try to discontinue it in a month.
I don’t have shortness of breath, chest pain, etc. but I do have a lot of fatigue.
would appreciate anyone’s feedback that is on this medication.
The Camzyos has brought my numbers down to normal.

Jump to this post

Hi,
I started Camzyos program in June at a lower 2.5 dose for first month. I was also on metoprolol 25 mg at the time. Symptoms improved somewhat but not enough.
Second month dr. increased Camzyos dose to 5 and reduced metoprolol to 12.5.
Reason being it was slowing down my heartbeat too much while Camzyos is trying to increase my heart energy overall.
I continued my third month at 5 with reduced metoprolol.
I have just completed my initial phase all with monthly echos.
I am on next phase of Camzyos “maintenance phase” with same doses.
My cardiologist will access any further changes in 10 weeks with a stress echo.
So far feeling better but not where I need to be yet.

REPLY
2 replies
Mentor
Debra, Volunteer Mentor | @karukgirl | Aug 27 9:39am
In reply to @isamac "Hi, I started Camzyos program in June at a lower 2.5 dose for first month. I..." + (show)
@isamac

Hi,
I started Camzyos program in June at a lower 2.5 dose for first month. I was also on metoprolol 25 mg at the time. Symptoms improved somewhat but not enough.
Second month dr. increased Camzyos dose to 5 and reduced metoprolol to 12.5.
Reason being it was slowing down my heartbeat too much while Camzyos is trying to increase my heart energy overall.
I continued my third month at 5 with reduced metoprolol.
I have just completed my initial phase all with monthly echos.
I am on next phase of Camzyos “maintenance phase” with same doses.
My cardiologist will access any further changes in 10 weeks with a stress echo.
So far feeling better but not where I need to be yet.

Jump to this post

Hello @isamac, and welcome to Mayo Connect.
I'm glad you found the Camzyos group, have you had a chance to read some of the posts?
I did not qualify for Camzyos and had a septal myectomy at Mayo Clinic, so I can't speak to your current experience and what you are going through, but I know there are a lot of other Camzyos folks who have similar stories.
I'm glad to hear you are better, that sounds promising. It seems Camzyos works differently for each person because we are all so different and unique, so perhaps going forward your HOCM will improve.
Are you an active person? Are you able to walk and exercise?

REPLY
1 reply
isamac | @isamac | Aug 27 10:27am
In reply to @karukgirl "Hello @isamac, and welcome to Mayo Connect. I'm glad you found the Camzyos group, have you..." + (show)
@karukgirl

Hello @isamac, and welcome to Mayo Connect.
I'm glad you found the Camzyos group, have you had a chance to read some of the posts?
I did not qualify for Camzyos and had a septal myectomy at Mayo Clinic, so I can't speak to your current experience and what you are going through, but I know there are a lot of other Camzyos folks who have similar stories.
I'm glad to hear you are better, that sounds promising. It seems Camzyos works differently for each person because we are all so different and unique, so perhaps going forward your HOCM will improve.
Are you an active person? Are you able to walk and exercise?

Jump to this post

Hi, im glad to connect to a group of folks who can share info of their individual experiences with Camzyos.
I am overall a healthy 65 year old! I had always been active until noticing a difference in my breathing when walking uphill or exercising a lot. This became evident around 5 years ago but I was initially diagnosed with some stress induced anxiety by a former cardiologist who passed away. In search of a new one last year I came to find out after undergoing heart ultrasound, heart MRI and heart stress test my heart was not in good shape.
Luckily on Camzyos I now have something other than open heart surgery to hopefully continue to improve my heart health and symptoms.

REPLY
2 replies
peggynurse | @peggynurse | Sep 5 9:09am
In reply to @isamac "Hi, I started Camzyos program in June at a lower 2.5 dose for first month. I..." + (show)
@isamac

Hi,
I started Camzyos program in June at a lower 2.5 dose for first month. I was also on metoprolol 25 mg at the time. Symptoms improved somewhat but not enough.
Second month dr. increased Camzyos dose to 5 and reduced metoprolol to 12.5.
Reason being it was slowing down my heartbeat too much while Camzyos is trying to increase my heart energy overall.
I continued my third month at 5 with reduced metoprolol.
I have just completed my initial phase all with monthly echos.
I am on next phase of Camzyos “maintenance phase” with same doses.
My cardiologist will access any further changes in 10 weeks with a stress echo.
So far feeling better but not where I need to be yet.

Jump to this post

thank you so much for your reply. So you are still on 12.5 of Metropol and five of Camzyos? good to hear from you.

REPLY
1 reply
isamac | @isamac | Sep 5 9:44am
In reply to @peggynurse "thank you so much for your reply. So you are still on 12.5 of Metropol and..." + (show)
@peggynurse

thank you so much for your reply. So you are still on 12.5 of Metropol and five of Camzyos? good to hear from you.

Jump to this post

Hi, yes for the time being I remain on same doses until my next echo with stress end of this year.
My dr. at that time may change my Camzyos to a higher dose and depending on the findings may eliminate the metoprolol completely.
I think with Camzyos there has to be frequent monitoring and adjusting of meds.

REPLY
peggynurse | @peggynurse | Sep 16 9:17am
In reply to @isamac "Hi, im glad to connect to a group of folks who can share info of their..." + (show)
@isamac

Hi, im glad to connect to a group of folks who can share info of their individual experiences with Camzyos.
I am overall a healthy 65 year old! I had always been active until noticing a difference in my breathing when walking uphill or exercising a lot. This became evident around 5 years ago but I was initially diagnosed with some stress induced anxiety by a former cardiologist who passed away. In search of a new one last year I came to find out after undergoing heart ultrasound, heart MRI and heart stress test my heart was not in good shape.
Luckily on Camzyos I now have something other than open heart surgery to hopefully continue to improve my heart health and symptoms.

Jump to this post

so did the Camzyos or the metroprol xl help with your stress induced anxiety? I seem to be having a lot of anxiety issues.

REPLY
1 reply
manuelpo | @manuelpo | Sep 16 9:41am
In reply to @peggynurse "so did the Camzyos or the metroprol xl help with your stress induced anxiety? I seem..." + (show)
@peggynurse

so did the Camzyos or the metroprol xl help with your stress induced anxiety? I seem to be having a lot of anxiety issues.

Jump to this post

I fight my anxiety by praying to God and it works really well on me since every time I feel that way I pray and I have strong faith in God. Further, the name of the medicine CAMZYOS, God asked me to read it backwards. I read it backwards and I was soooooo shaken since it spells my first and middle name on it. God bless everyone.

REPLY
avcowie | @avcowie | Sep 16 1:32pm
In reply to @jess51 "Hello from Victoria! I am 2 months plus into Camzyos and it continues to be very..." + (show)
@jess51

Hello from Victoria! I am 2 months plus into Camzyos and it continues to be very beneficial. I have had 2 ECGs since I started and I guess all looks fine as my dose of 5mgs has been maintained. I am happy to hear that you are also benefitting. Such a nice change!

Jump to this post

Hi Jess51,
I’m from Victoria BC too!
I had OHS Feb 1 for my HCM but it was my Mitral valve causing most issues so they replaced it and left my heart wall alone. I tried Camzyos prior to that and it made me feel worse. Now I’m hoping it will work better for me. My cardiologist is setting up my first new delivery. So I hope I get it soon.
How are you doing these days? Have you increased your dose?
Thanks in advance ❤️

REPLY
1 reply
jess51 | @jess51 | Sep 17 1:15pm
In reply to @avcowie "Hi Jess51, I’m from Victoria BC too! I had OHS Feb 1 for my HCM but..." + (show)
@avcowie

Hi Jess51,
I’m from Victoria BC too!
I had OHS Feb 1 for my HCM but it was my Mitral valve causing most issues so they replaced it and left my heart wall alone. I tried Camzyos prior to that and it made me feel worse. Now I’m hoping it will work better for me. My cardiologist is setting up my first new delivery. So I hope I get it soon.
How are you doing these days? Have you increased your dose?
Thanks in advance ❤️

Jump to this post

Hello
Nice to hear from someone in Victoria!
I have remained on the 5mg of Camzyos and it continues to work very well for me. When I forget to take it, I am made aware of how well it IS working.
I wish you the best of outcomes - My cardiologist is part of the Pulse Cardiology group and I have been very happy with the clinic.

More than happy to communicate privately as well since we are both from the same vacinity.

wishing you the best outcomes!
Jessica

REPLY
joanallione | @joanallione | Sep 23 7:57am
In reply to @isamac "Hi, im glad to connect to a group of folks who can share info of their..." + (show)
@isamac

Hi, im glad to connect to a group of folks who can share info of their individual experiences with Camzyos.
I am overall a healthy 65 year old! I had always been active until noticing a difference in my breathing when walking uphill or exercising a lot. This became evident around 5 years ago but I was initially diagnosed with some stress induced anxiety by a former cardiologist who passed away. In search of a new one last year I came to find out after undergoing heart ultrasound, heart MRI and heart stress test my heart was not in good shape.
Luckily on Camzyos I now have something other than open heart surgery to hopefully continue to improve my heart health and symptoms.

Jump to this post

what was your gradient before and after CAMZYOZ?

REPLY
View MoreView Less
Please sign in or register to post a reply.