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Anyone take new drug Camzyos (mavacamten) for HCM?
Hypertrophic Cardiomyopathy (HCM) | Last Active: 15 hours ago | Replies (821)Comment receiving replies
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!!
Replies to "Hello again @junecc. I hope you are having good luck getting your insurance worked out. I've..."
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.”
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Thank you, and I totally agree. Unfortunately an echo is an all day event for me bc I don’t have a center of excellence near me. 2 1/2 hour drive, so 5 hours plus the echo. Because my gradient increased significantly, I’m anxious to see how the drug can help. It will be worth it!