Anyone take new drug Camzyos (mavacamten) for HCM?

Jess: I am a 73 year old male with a long standing diagnosis of Obstructive HCM. Over time my HCM progressed and I experienced the expected symptoms and clinical data of progressive heart failure. I am otherwise in generally good health, but my heart condition required significant and frustrating adjustments to my activities of daily living.
GOOD NEWS! I began Camzyos in May 2022. After three daily 5mg doses all symptoms were gone. I thought it was psychosomatic! Now after 7 months all is still excellent and after a couple of months the dosage was reduced to 2.5mg daily. I have been under a very strict protocol of monitoring and testing (MD visits, echos, and EKG).
Camzyos does not work for everyone and might he dangerous for some. But it is worth a try under expert supervision and careful follow up.
Camzyos has been a life changer for me! I can only thank God, my cardiology specialist in HCM, and his team in Memphis, Tn. And, the increadible brains that invented this new drug!
Peace!

My name is Don I live in the state of New Jersey been taking camzoia's for 4 days now have no side effects go back and forth weeks for echocardiogram and see what the prognosis is thank you

I may be starting and have concerns too. Have you experienced any side effects such as headache. Also read I can’t take medication for heartburn such as Tagamet. Have you had to make changes because of Camzyos?
Can you comment on getting the medication, easy or frustrating as some others have mentioned.
Thank you.

I may be starting and have concerns too. Have you experienced any side effects such as headache. Also read I can’t take medication for heartburn such as Tagamet. Have you had to make changes because of Camzyos?
Can you comment on getting the medication, easy or frustrating as some others have mentioned.
Thank you.

It took me 1 month and a half waiting time to get an appointment with my Cardiologist (highly specialized in Hypertrophic obstructive cardiomyopathy (HOCM),) in Aurora University of Colorado:
https://www.uchealth.org/locations/uchealth-cardiac-and-vascular-center-anschutz/
After I met the Cardiologist, he gave me 3 alternatives for my HOCM and I chose Camzyos as the right treatment so it took me about 2 weeks (a lot of paperwork to fill out with his nurse helping me on that) to get the prescription home delivered by mail only overnight (they do not have at local pharmacies and I requested mail overnight plus signature required). The overnight delivery was at no cost to me. The medicine cost is $8,600 per month and my insurance covers it with $200 monthly copay. Since I have been out of work for over 2 years, Brystol Myers Squibb laboratory that manufactures Camzyos took the paperwork filed out with my nurse (the Cardiologist nurse) so they pay for me $190 and my copay is only $10 a month.

Side effects: a little light dizziness for a few early mornings and that was it since I am very careful not to take the over 100 over the counter medicines that interact with Camzyos. Me and other 5 patients now have NO SIDE EFFECTS at all since we follow strictly all the instructions from my Cardiologist: good diet (no processed food) and light exercise such 1 to 2 miles relaxed walks every single day.
After I took Camzyos for 2 days all my angina (chest pressure) is gone and has not come back at all. Further, I am able to walk fast with no angina at all. My septum (left wall ventricular wall muscle of my heart) went down in thickness from 2.2 cm (almost 1 inch) to 1.6 cm in only 8 weeks. After 6 months treatment my septum thickness is now between 1.2 cm to 1.4 cm. Before I took this medicine I had strong faith that it will work with no side effects so no matter what, I put in my mind only positive thoughts about this since Camzyos is avoiding me Alcohol septal ablation (ASA) plus having a pacemaker or having an open heart surgery.

I am feeling wonderful with freedom to go hiking, climbing, light slow jogging, walking my dog and I am still taking camzyos 5 mg and will continue taking it till the Cardiologist ask me to change dosage or stop it.
ALL this process can be challenging just hang in there and do your best for it will work out for you. I wish you the best !

I also go to cardio at Anschutz. 🙂

Hi @junecc . You didn't specifically ask me about this but I will chime in anyway. I started Camzyos just over a year ago at age 59. I have never had any side effects whatsoever. I've been on Omeprazole for something like 10 years. I **think** both Tagamet and Omeprazole are used to treat the same kinds of problem. Omeprazole was one of the medications explicitly referred to in the Camzyos warnings. I had several conversations with my cardiologist, my pharmacist, my family doctor and my Camzyos REMS program nurse case manager, and all of them advised that, in my case, I could continue the Omeprazole while taking Camzyos but that I should (i) watch out for any problems - of which there have been none - and (ii) take the Omeprazole in the morning and the Camzyos at bedtime. I have no medical expertise and you should not take this as advise for you - listen to your experts, not the internet - but in my case there have been no issues except that I am no longer allowed my beloved grapefruit. Good luck with your treatment!

A Cardiologist that is "licensed to prescribe Camzyos" (very few are licensed on that medication) can prescribe you that medicine in the USA. The medication cost around $8,500 per month so you need to have some kind of health insurance with prescription benefits plan to see if they cover it. The insurance will direct you to a mail pharmacy that will mail you the medicine as far as I understand only in the USA, but find out if they may have changed it. The medication blocks the protein that feeds that muscle heart (called septum) to grow so the muscle starts getting thinner instead of softening. I felt in only 1 week a big difference in my heart with the angina being gone almost right away but my muscle was grown 2.2 cm which is almost blocking the whole lower part of my heart so now in 3 months is 1.4 cm so I am doing better. It does require the first 3 months a monthly echocardiogram then after that every 3 months echocardiogram so the doctor can calibrate the right dosage for you (5 mg, or maybe 10 mg, etc.) the doctor will adjust the dosage for you.