I should start by saying I am not a patient at the Mayo clinic. I live near a big city on the East Coast. My experience with Camzyos was about 50/50.

I gained about 50 lbs in the two years I was on it. I reported it to BMS pharmacovigilance. They argued with me. Really! They said it wasn't something reported during clinical trials and it must have been my habits that caused the weight gain.

I was told to stop taking it about four months ago. My ejection fraction dropped to about 40 between echo number 8 and echo number 9.

Coming off Camzyos was no picnic for me. The first two weeks were fine. The shortness of breath slowly returned. Then I began to have terrible anxiety and panic attacks. That coincided with the beginning of a bout of insomnia that lasted about 5 weeks. The insomnia was absolute torture. My psychiatrist and my PC consulted with my cardiologist and I was given some Klonopin and a sleep aid that did nothing. Sleep deprivation is literally a form of torture.

Again I reported this to BMS pharmacovigilance. Again, I was told that it was not consistent with the data that they had from the clinical trials. I call BS on BMS.

While I was on the drug, despite the weight gain, I had no acid reflux and I was able to run up stairs and not be short of breath. That was a treat after 30 plus years of HCM symptoms. But the insomnia that I suffered during the withdrawal was unbelievable. The Klonopin did not help me sleep, but it did decrease the anxiety. The sedative was useless.

During those weeks of insomnia, my work performance was severely impacted and I was unable to get the "Doctor's note" because insomnia was not something that was recorded in the clinical trials. My family had to tolerate my unbearable moodiness. I did start to drop weight though.

Hopefully what I reported has been recorded and added to other data from other patients. Hopefully future patients will get that information so they know what to expect.

I really want to trust doctors, but I've had so many terrible experiences in my 49 years, starting with my pediatrician laughing at me when I told him I didn't think I was getting enough air. I think other HCM patients can probably identify with that. 'Doctor when I'm out riding bikes with my friends. I can't breathe and keep up with them." "Well, son, you're just need to try harder."

I feel like my Camzyos experience has been an extension of that same conversation. Like I chose to gain the weight and I chose weeks and weeks of sleep deprivation.

I wish everyone the best. Please do your research. Ask every question. Be your own advocate. I know that Camzyos has been life changing for many patients. Good luck.