Anyone take new drug Camzyos (mavacamten) for HCM?

@janeal99 - Hi! Welcome to the Camzyos family. I'm 61 male, on Camzyos for just over 2 years. After several months (I can't remember exactly how long), we discovered that my BP was a bit higher than normal. Nothing really bad but enough that my cardiologist put me on Losartan. Just had an echo done this morning and I was 111/73, and that's pretty typical for me now. With the incredible quality-of-life improvement I got from Camzyos, that extra med was a small price to pay (for me). Fortunately I have not had any other issues such as the tinnitus or the pounding you described, so I can't offer any useful advice. Those must be quite frustrating for you. Second thought - Do you have any gastro issues? I have been on Omeprazole for stomach acid for number of years. While Omeprazole was a possible red flag for Camzyos, I was given the go-ahead by the cardiologist, the pharmacists and the REMS program nurse case manager. I wonder if, perhaps, your stomach pounding would be related to an acid-aggravated gut somehow. But I am a simple civilian with NO medical training or expertise, so DO NOT listen to my speculations - talk to your doctor/cardiologist. Good luck, I hope you can get these side effects worked out and can experience only the good.

Hello everyone. I'm a 69 year old male. I've been on Camzyos 5g for 4 months but I have some related issues.

First the good news. My gradient has improved from 165 to 27. Now, the more problematic part. I believe the improvement has significantly increased the blood flow through my heart which ( in my opinion ) has led to issues with high blood pressure, including an ER visit. I've never had a problem with hypertension, prior to starting Camzyos. The elevated BP readings started within 30 days following the start of my Camzyos regimen. I think I'm on the road to getting my BP stabilized. But I also have developed a significant increase in tinnitus in both ears, and a pounding in my stomach, both of which, are quite unsettling.

Anyone else had similar experiences, or suggestions otherwise? Thank you.

@bocellibonjovi71 anyone else have a septum this thick also? Late Diagnosis?

Ocala FL. Camzyos they had a bridge program while they. Work with ins. Company for approval. Covermymeds sent it for four months now my ins co covers it. Upcoming septal myectomy in 11 days.

@bocellibonjovi71 I did not realize that septal myectomies took place in Mayo Jacksonville, even though it is a COE. How nice for our southern fellow big hearts! Wishing you a speedy recovery.

29mm/2.9cm

@sandygood I have Aetna advantage and it is covered because I have met my out of pocket. Different states have different deals with different companies. Good luck-it’s good to look ahead. My out of pocket is changing the first of the year so I may have to change.

@bocellibonjovi71 If you don’t mind me asking, what does your septum measure?

@karukgirl that's why I chose mayo clinic in the first place

@karukgirl at Mayo in Jacksonville.