Anyone take new drug Camzyos (mavacamten) for HCM?

Yes likewise, 74 and apparently had HOCM a long time and ur came to light in the gym aged 57 (as I overdid it) and then symptoms began but with meds was fine. I only did this operation (for mitral valve regurgitation) upon advice of surgeon. Hated everything about it at the beginning but tomorrow week 14, am beginning to feel alot stronger. Who knows…. Camzyos is a wonder drug for some but my real problem was the mitral valve hence the operation. Camzyos comes with a warning and may not suit everyone (not trying to put you off but felt amazing for the first week but then headaches started, jaw ache and blurred vision just was not for me. Di you have symptoms? Are you in meds? It’s scary in the beginning but don’t be. Do you know what your gradient is?
Kate

Thanks so much. I am 73 and new to all of this although it appears that I have had HOCM all my life! It sounds like the verapamil helped you for a long time and that you tolerated it well - anything else I should know about it? Also, when you say that the Camzyos didn't suit you - can you tell me a bit more about what you mean? Thank you again.

Hello there, yes had verapamil for many years and still in 40mgs am and on. After my mini mitral replacement with a small mini myectomy (no scars) but very painful and a long recovery and am in week 14 this coming Monday. Minimally invasive often means more pain as they have to cut under right rib to gain access and under right rib. Verapamil slight constipation and little fluid around the ankles. Camzyos a completely different drug (as you say verapamil treats the symptoms) it apparently stops the hyper activity of the heart therefore thickening and gradient comes down but does have a black box warning. I took it for a week but it just didn’t suit me sadly. That’s my way of describing it, do hope this helps. Good luck. What age are you ish?

Hi - my doctor just suggested we try verapamil and if not tolerated then go on to Camzyos. Two questions - how well do you tolerate the verapamil? Side effect? Also, I think that verapamil treats only symptoms while Camzyos does do some reduction of the obstruction - perhaps permanentely? Is that your understanding?

Goodness me such a quick reply...thank you. So young then...Ok I understand a bit more now. I think the surgeon wants to minimally cut down the middle to repair the mitral valve as well which may or may not need doing. I suggested doing the thickening first (round 1.6/1.7 mm to which he said if the mitral valve needs doing too we will have to go in twice. I am on verapamil 80mgs at night and 40mgs am plus 3 mgs prednisolone for aches. What are you on if any? I am getting out of breath after eating and better on after lunchtime. How about you? Sorry for all the questions a big decision coming.

Thanks - I am fortunate that I actually feel just fine - just shortness of breath 3 - 4 miles away. I hear you about being a 3 hour drive and not near "civilazation" - I have lived in several similar places in my life. Good luck resolving this!

I'm super glad you and your spouse can turn the trips into a nice adventure, and that the 2.5 hour drives seem easy - where I live, the nearest civilization is a 3 hour drive away. But bummed about you having to hope you have "just" HOCM ... what a predicament. I can't speak from any personal experience but JH certainly seems to have a huge reputation in a lot of areas; I agree that you are in good hands. And if it is "just" HOCM? Hopefully the Camzyos will be what you need. Keep the faith!

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.”

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!!