Starting Camzyos, what to expect
I got diagnosed with Apical HCM back in summer of 2024. My symptoms were basically non-existent, but a period of palpitations that stopped on their own after a few weeks was enough to send me to my GP's office and get an EKG. That set off getting diagnosed with a 17mm thick septal wall. But, because I had no symptoms and no real risks after an MRI and stress echo, we just decided to monitor it.
I started an exercise routine in summer 2025 because I had the urge to get healthier after my father passed at the age of 82 (not heart related), and I was turning 40 soon, so I wanted to start making some changes. I realized, for the first time really, that my being lightheaded after intense exercise wasn't normal. (I've wondered why people enjoy exercise my entire life because I always felt awful after.) I got referred to a specialist, had another MRI with contrast this time, and another echo and stress echo. That was last week, and since then I've learned that my heart wall has grown to 27mm and my "gradient" (I still don't totally understand what this is) under stress was up to 90 now (it was just on the high edge of normal before). My doctor is trying get the insurance company to approve a loop monitor (I only had one very short and low intensity V-tach with my last Zio 2-week patch), and their office has ordered a Camzyos prescription. After jumping through the insurance SaveOn program, the co-pay assistance program, and registering for REMS hoops, the order is being processed and I'm awaiting a call from the insurer to discuss it.
Unsurprisingly, I'm a little nervous about starting it. This is my first medication that feels this intense. Any experiences, insights, words of encouragement, or really any conversation at all is appreciated. It's been a thing I've known about for a couple years now, but it suddenly seems a lot more real and unnerving. Thanks to anyone that read this far and takes an interest!