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Is Camzyos effective long term?

Hypertrophic Cardiomyopathy (HCM) | Last Active: 2 days ago | Replies (22)

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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.

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Replies to "Hi @par4rosy et al. When I first saw this post, I thought the question was asking..."

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.

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.