Is Camzyos effective long term?

Hello there @par4rosy, that must be super frustrating to say the least!
There are members here who have had the same experience as you, and hopefully they can chime in with their experience.
In the meantime, I would not hesitate to let your cardiologist know your symptoms have returned. That seems important.
@jaymaysea and @kelliw are Camzyos champions and may have some thoughts to share with you. Have you had time to read some of their posts?

Hi @par4rosy. Reach out to your cardiologist. I have been on 5mg of Camzyos since last June 2023. My dosage was lowered to 2.5mg for a month but after pushing my cardiologist to do a stress echo I was returned to 5mg. My obstruction is only significant upon excretion. Consequently, I was misdiagnosed for years.

My echos show that my gradient has improved; but, my symptoms — shortness of breath — upon exertion have persisted. I have not experienced the kind of symptom relief that some of the others in our group have had. But I am encouraged that my gradient has improved.

I am scheduled to see a new cardologist next month. Perhaps he can help address why my symptoms have persisted.

Hang in there. Don’t get discouraged! Have faith. Ask questions and push for answers.

Hi @par4rosy. Definitely talk to your specialist(s). I've been on Camzyos since Sept 2023 - hardly long term, I know, but hasn't been around long enough for any of us to have long term experience. Like you, I got almost instant relief from all of my oHCM symptoms, and then, out of nowhere, they just returned all at once one morning. I was devastated, thinking it was all false hope. But by the next day they were gone and I was back to feeling great again. Then it happened a second time, but again, gone by the next day. I haven't had a recurrence now for months, and I'm hoping it stays away. Shortly after my dose was increased from 5mg to 10mg I had a couple brief, odd things happen, but again, those seem to be in the past now, and were almost certainly unrelated to the Camzyos (says my medical degree from University of Google). Hope your experiences are as brief as mine and you can rebound quickly.

Hi @par4rosy et al. When I first saw this post, I thought the question was asking if the effects of Camzyos continued long term 'after' the patient stopped using Camzyos. So, even though I'm not responding to your specific question ((although, as a possible answer to your question, have you been tested for Atrial Fibrillation (AFIB)??)), I thought that I would tell the forum about my 84 year old mother's experience after she stopped taking Camzyos. (note: this is a long description, but it ends with Mom continuing to have excellent health after being off of Camzyos since November 2023 - i.e. with a recent echo showing no gradient at all). Mom started taking Camzyos in February 2023 after being fully tested and accepted to be a part of a drug trial here in Canada. It took effect almost right away, and all of her symptoms were relieved the same as your experience in the beginning. In her case, the effects continued. Her doses fluctuated from 5.0mg to 2.5mg to 5.0mg and then to 10mg. She had echos every month, and her gradient continued to go down. Then, in November 2023, her health decreased significantly and she was hospitalized. It turned out that she had Covid. But, while in the hospital, they stopped her Camzyos completely because they didn't have any knowledge at all with this new medication. Anyways, she did definitely did have Covid, but it took her much longer to recover in hospital than normal. She was then diagnosed with AFIB for the first time. They gave her blood thinners and sent her home. Her condition continued to deteriorate (i.e. she came very close to dying). While in the Critical Care Cardiac Unit, they shocked her heart back into regular rhythm. Her health started improving immediately, and now her health has fully recovered and she is actually feeling better than she has for several years -- and she has been off Camzyos since November last year (i.e. 4 months) -- and her latest echo showed no gradient at all. I think that her cardiologist will probably have to put her back on Camzyos at some point, but I thought that her experience so far might be of interest to this forum.

Thanks for sharing this story about your Mom. I sure hope the cardiology researchers pay attention to this forum. Invaluable information.

To the question about Longterm effects of Camzyos, my understanding is that it is too soon to know.

My experience is that I feel 90% better. I pushed my doc to increase my dose because my gradient wasn’t coming down. I paid for a pharmacogenomic test (not available in our publicly funded health care system in Canada) and learned that I’m a rapid metabolizer of Camzyos. I’m nowon the highest dose - 15mg - and feel good. And my gradient dropped from
139 to 58.

I’m grateful every day that this drug is available. I have my life back.

There is ongoing research on the next generation of mavacamten. So I’m hopeful that we will all benefit.

Thank You - everyday I learn something new and everyone’s experiences are so different. So grateful to this forum.

Thanks your response - I will see my cardiologist this week and see where it takes me. He has never mentioned AFIB so far.
It’s just that I did so well for 3 months on 5mg of Camzyos that I could not believe how overnight I could feel so bad. I feel better today but very perplexed going forward as don’t know what the next day will bring.

I'm relieved to hear you see your doctor this coming week. It has to weigh heavy on you, but hopefully some of what you read here can bring a little peace of mind?
I appreciate the input from the awesome Mayo Connect HCM group, like @nanakpm who shared a wonderful response that reflects how different each one of us is and no two people will have the exact same response to medication. Mayo Connect allows us to share back and forth to help each other. Even if it's just a "hang in there" or "don't give up"!
This is pretty new to you, so I would probably be worried too. @nanakpm shows that being your own best advocate is what has helped her through a rough patch.

I mentioned AFIB because, for my Mom, when it was combined with her HOCM, it caused a deterioration to her health. And, like HCM, AFIB can be very difficult to diagnose. From what I understand, AFIB can only be detected when the patient's heart is being monitored -- and AFIB can very randomly start and stop on it's own.

I read someone's comment with the same situation. That person went back to his Cardiologist that prescribed Camzyos and got the issue resolved. I would suggest you to do the same thing so that the Cardiologist will give you the best advise. Do not get discouraged.