Anyone take new drug Camzyos (mavacamten) for HCM?

That’s amazing! I live in Myrtle Beach SC. Where did you find a cardiologist who is “ licensed”? I have yet to find a cardiologist who will even discuss this medication let alone prescribe it.

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!

Still feeling great on camzyos after 2 years and 5 months on 2.5mg. No side effects to date. I take 3 generic meds for pressure, rate, and cholesterol. No other meds so no restrictions or reactions. Regarding costs and insurance arrangements, my cardiology support staff took care of setting that up along with the required clinical documentation. An experienced team with HOCM should know how to get that done.
Being older and on Medicare helps. This and a combination of a private Medicare Rx supplement I had, BMSquib, Healthwell Foundation, and CVS Specialty pharmacy got it done. This was all coordinated by my cardiology team with a little online paperwork by myself.
Blessings and God's speed.

Hi @debra1954
If you call 1-833-628-7367 and provide them your zip code where you live, they can give you the name with a phone number of a "Camzyos certified Cardiologist" in your area so you can make an appointment with the Cardiologist.

Explain clearly to them your health condition such as HOCM (if you have that hypertrophic obstructive cardiomyopathy) and they can refer you to a great Cardiologist. I did search in Myrtle Beach, South Carolina and found that there is a "Grand Strand Heart and Vascular Care - Myrtle Beach" but I am not sure if they have a certified Camzyos Cardiologist. Just call the number noted above and they will help you. God bless you and I hope all works very well for you.

Yes, that is what I am looking for, certified Camzyos Cardiologist. Thank you. I did look on Squibb website and it listed 3 but when I reached out to nurse receptionist my voicemail wasn’t returned, or replied they can’t share that information until
I actually make an appointment. Two cardiologist are 2 hrs away in Charleston which a long way to drive without knowing if Dr does in fact still work with Camzyos and is positive about outcomes.

Thank you so much for this positive feedback. I have concerns about the hassle factors for the first 3 months. I'm expecting my first shipment tomorrow, because of a call from Bristol Meyers Squibb. BMS told me I should be hearing from Cover My Meds. Nothing so far.
I read a few comments about headaches, but I'm going into this with a positive attitude. I'm an active 64 year old. I walk 25 miles a week and weight lift 3 times per week. I'm just having issues with stairs and hills. Who knows, maybe pickleball is in my future!
Thanks for the reply. I'll keep you posted.
Happy Thanksgiving to you and yours.
June

Hello again @junecc. I hope you are having good luck getting your insurance worked out. I've read other people being concerned about the hassle factor involved in having regular echos done but my view on it was this: I have to get an echo once a month for the first three months - about the same as going and getting a haircut. And it takes about the same amount of time as a haircut. After that, once things settle into a routine, it's only once every 3 months. I've been on it now for about 14 months, and at 3-month intervals I can never even remember when the next one is due - it's become that much of a nothing in the "hassle" category. For me, given how much the oHCM was restricting me, it was a tiny price to pay. It also gave me a lot of comfort knowing that after 16 (17?) years of undiagnosed, unmonitored deterioration, I was being monitored regularly, and any negative responses would be caught quickly. Every person is different, of course, and your experience will probably not be quite the same as mine, but I encourage you to not let a (really minor) short term initial hassle distract from what could be (hopefully will be) an immensely positive long term benefit. Best wishes!!

Hi Captainterry,

Do you know what your gradient was when you started on Camzyos? I just learned in June of 23 mine was zero while taking Norpace. This past August it was measured at 76. Why I'm going on Camzyos as soon as my insurance approves.

Thank you again,
June

Hello again @junecc. I hope you are having good luck getting your insurance worked out. I've read other people being concerned about the hassle factor involved in having regular echos done but my view on it was this: I have to get an echo once a month for the first three months - about the same as going and getting a haircut. And it takes about the same amount of time as a haircut. After that, once things settle into a routine, it's only once every 3 months. I've been on it now for about 14 months, and at 3-month intervals I can never even remember when the next one is due - it's become that much of a nothing in the "hassle" category. For me, given how much the oHCM was restricting me, it was a tiny price to pay. It also gave me a lot of comfort knowing that after 16 (17?) years of undiagnosed, unmonitored deterioration, I was being monitored regularly, and any negative responses would be caught quickly. Every person is different, of course, and your experience will probably not be quite the same as mine, but I encourage you to not let a (really minor) short term initial hassle distract from what could be (hopefully will be) an immensely positive long term benefit. Best wishes!!

I totally agree too. I was diagnosed with HOCM about 2 months ago. I was about to go with my local cardiologist who is certified for Camzyos - but has only worked with 25 patients so far. So I went to John Hopkins for a 2nd opinion. My local guy was about to move right ahead with Camzyos.
I live 2.5 hours from JH. JH picked up an M-spike in my blood which can be correlated with multiple myeloma- and as a result are testing several different things to be sure we will be treating the right thing. MM can deposit proteins in your heart that can cause the obstruction which is not treated the same way as HOCM at all. Not sure quite yet what is going on since I am still in the testing phase. Take note: my very lovely local guy could have put me on Camzyos without knowing that something else was going on. That something would have to be treated by oncologists - so I do hope that I “just” have HOCM. Going to JH may saved me from treating the wrong thing and having a cancer advance in the meantime!!! So now, the driving seems like nothing! My spouse and I just try to make the trip fun! I am at JH right now for a few tests and back again in 2 weeks for a heart biopsy! Last night, we stayed at a beautiful hotel on the harbor and had a fabulous dinner out. I don’t know your circumstances but wanted you to know my story! The heart is an intricate thing and central to health. I know I am in great hands at JH.”