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.

Mentor
Debra, Volunteer Mentor | @karukgirl | May 20 8:50am
In reply to @maryelizabethp "Hello all my compadres. I have severe OHCM and had the surgery in 2014 at Rochester..." + (show)
@maryelizabethp

Hello all my compadres. I have severe OHCM and had the surgery in 2014 at Rochester MAYO. My question is this: Has anyone taken Camzyos post surgery? I am on more prescription drugs than I thought possible, but with aging my symptoms are worsening. The fatigue is so so frustrating.

I would be glad for any information regarding.

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Hello @maryelizabethp, and welcome to Mayo Connect!
I'm so glad you found this site and made your first post. I have some questions for you...
You mention you had 'the surgery' at Mayo in Rochester, do you mean a septal myectomy?
Have you been seen by an HCM expert recently?
Have you tried to contact the cardiology department at Mayo through the patient portal?
It sounds like you really need to get an opinion from an HCM expert and find out if these issues are due to hypertrophic cardiomyopathy, if these are from the medications you are taking, or just what is causing your worsening symptoms. It must be frustrating!
Are you close to Mayo Rochester? Have you tried to contact using the patient portal?

REPLY
1 reply
manuelpo | @manuelpo | May 20 10:10am

Hi @maryelizabethp,

Yes, I saw notes here of patients who after surgery they had to take Camzyos post surgery.

I hope all works well for you.

REPLY
joanallione | @joanallione | Jun 2 12:50am
In reply to @kelliw "Good morning-I just received a call from MyNurse Navigator rep and he connected me to a..." + (show)
@kelliw

Good morning-I just received a call from MyNurse Navigator rep and he connected me to a nurse, but she didn't see anything written about flying or not, while taking Camzyos and my doctor doesn't know since I am the first patient. I have 2 trips coming up so hopefully I will be fine. 🙂

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So were you fine flying?

REPLY
1 reply
jenywilliams | @jenywilliams | Jun 2 10:49am
In reply to @kelliw "Good morning-I just received a call from MyNurse Navigator rep and he connected me to a..." + (show)
@kelliw

Good morning-I just received a call from MyNurse Navigator rep and he connected me to a nurse, but she didn't see anything written about flying or not, while taking Camzyos and my doctor doesn't know since I am the first patient. I have 2 trips coming up so hopefully I will be fine. 🙂

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I flew after being g on camzyos 9 months.. no issue at all. So grateful!!!!

REPLY
kelliw | @kelliw | Jun 3 9:59am
In reply to @joanallione "So were you fine flying?" + (show)
@joanallione

So were you fine flying?

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Yes! I have now flown quite a few times with no issue. 🙂

REPLY
1 reply
joanallione | @joanallione | Jun 10 8:46am
In reply to @kelliw "Yes! I have now flown quite a few times with no issue. :)" + (show)
@kelliw

Yes! I have now flown quite a few times with no issue. 🙂

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How lng were your flights?

REPLY
joanallione | @joanallione | Jun 10 8:53am

Has anyone taking Camzyos gone up to an altitude of 7000 feet or higher? If so how long did you stay abd what was the altitude?

REPLY
1 reply
joanallione | @joanallione | Jun 10 9:27am
In reply to @katiekins "Horrid drug for me since I started on Janaury 9th 2024, amazing first week then the..." + (show)
@katiekins

Horrid drug for me since I started on Janaury 9th 2024, amazing first week then the side effects stated severe headaches, aching muscles, eye disturbance.... etc....I was on Veramamil at the same time could it have been that who knows.....now April having have developed Atrial Fibrillation during the past month... Never ever had this before.....Seeing my cardiologist on the 23 rdApril we shall see...I am delighted for all of those that have had their lives changed by this drug...sadly I am not one of those and am looking at septal myectomy soon.
Keep well and safe all....

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my cardiologist said it has many interactions and one is with the other medication you are on. Veranamil

REPLY
2 replies
katiekins | @katiekins | Jun 10 4:08pm
In reply to @joanallione "my cardiologist said it has many interactions and one is with the other medication you are..." + (show)
@joanallione

my cardiologist said it has many interactions and one is with the other medication you are on. Veranamil

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Thank you that, yes I also heard that. Oh well wasn’t to be!

REPLY
chandu | @chandu | Jun 12 5:15pm
In reply to @karukgirl "Hello @maryelizabethp, and welcome to Mayo Connect! I'm so glad you found this site and made..." + (show)
@karukgirl

Hello @maryelizabethp, and welcome to Mayo Connect!
I'm so glad you found this site and made your first post. I have some questions for you...
You mention you had 'the surgery' at Mayo in Rochester, do you mean a septal myectomy?
Have you been seen by an HCM expert recently?
Have you tried to contact the cardiology department at Mayo through the patient portal?
It sounds like you really need to get an opinion from an HCM expert and find out if these issues are due to hypertrophic cardiomyopathy, if these are from the medications you are taking, or just what is causing your worsening symptoms. It must be frustrating!
Are you close to Mayo Rochester? Have you tried to contact using the patient portal?

Jump to this post

I was diagnosed in 1987. I am now 75 years old and had AV node ablation, not in afib now, but started having imbalance walking few weeks ago.

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