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.

joanallione | @joanallione | Jun 10, 2024

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?

joanallione | @joanallione | Jun 10, 2024

In reply to @kelliw "Yes! I have now flown quite a few times with no issue. :)" + (show)

How lng were your flights?

kelliw | @kelliw | Jun 3, 2024

In reply to @joanallione "So were you fine flying?" + (show)

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

jenywilliams | @jenywilliams | Jun 2, 2024

In reply to @kelliw "Good morning-I just received a call from MyNurse Navigator rep and he connected me to a..." + (show)

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

joanallione | @joanallione | Jun 2, 2024

In reply to @kelliw "Good morning-I just received a call from MyNurse Navigator rep and he connected me to a..." + (show)

So were you fine flying?

manuelpo | @manuelpo | May 20, 2024

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.

Debra, Volunteer Mentor | @karukgirl | May 20, 2024

In reply to @maryelizabethp "Hello all my compadres. I have severe OHCM and had the surgery in 2014 at Rochester..." + (show)

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?

maryelizabethp | @maryelizabethp | May 19, 2024

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.

dwc62 | @dwc62 | May 16, 2024

In reply to @newtosohcm "Wonderful to hear you are persevering. I’m 70 this year and having knee surgery next week...." + (show)

Just an FYI, I made it through major back surgery at the end of January with no problems.

boatsforlife | @boatsforlife | May 15, 2024

Haven't posted here for a while but I constantly lurk, reading all of the experiences, and feeling just sick for those who haven't had success with Camzyos, after so much hope and promise. As I've previously noted, I'm one of the lucky ones - 100% symptom-free with no negative side effects. Update - started 5mg Camzyos in September, and it took less than 2 weeks to become symptom-free. After the 12 week echo I got bumped to 10mg. I didn't notice any change between 5mg and 10mg but my cardiologist did and he is super-pleased with the current state. My blood pressure did increase a little bit when starting at 5mg and then again when moving to 10mg. He put me on Losartan (in addition to my previous Tiazac) and the numbers are coming down. I still harbour that inner fear that it will suddenly stop working, but for now, I'm living my best life!