Has anyone increased dose of Camzyos?

Posted by nanakpm @nanakpm, Jul 27, 2023

I have been on 5mg Camzyos for three months. Feeling much more energy and almost no symptoms. But my gradient remains dangerously high at 139. Has anyone been elevated to a higher dose? If so, did you respond, and how long did it take? I want to give it a try before opting for open heart surgery which scares me to death. I am 74 and otherwise healthy.
Thanks for any information you can share.

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Yes to answer your question. I was on 5 mg and feeling much better but my heart Dr said my numbers were not what she wanted and increased the dosage
I've been on 10 mg for 4 weeks and feeling even better than before. My next ultrasound is Aug 11 so I don't know my numbers now. I'm an 81 yr old female who remains grateful for camzyos.

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THANK YOU so much for your reply! I was literally disheartened after my echo today. I am looking forward to increasing my dose to 10mg, and hope to have similar results to yours. I wish you all the best for your next echo. I think it may take longer for older hearts to respond! So at the very least, we are doing something for the next generation by contributing to knowledge about Camzyos. I feel better after reading your message. Thanks again.

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My pleasure. I don't believe you'll feel differently with the increase. Find some fun and enjoy your days.

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I increased from 5 to 10 mg but am now considering surgery. The 10 mg felt great for a while but the echos never showed the kind of improvement some very lucky patients have experienced. My gradients have been all over the place from 60s to 227. However I also have serious bradycardia and 'eccentric' mitral valve regurgitation which complicates things. I am 71 and petrified of surgery but occasionally feel so weak that I can't walk. The pounding heart, head rushes, hot/cold sensations are no way to live. There's no predicting when these will occur so I stay close to home. I can be well enough one minute and grasping furniture to stay upright the next. I appear to be an outlier so don't base any decision to ask for a higher dose on my experience. Very best of luck to you.

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@quinn

I increased from 5 to 10 mg but am now considering surgery. The 10 mg felt great for a while but the echos never showed the kind of improvement some very lucky patients have experienced. My gradients have been all over the place from 60s to 227. However I also have serious bradycardia and 'eccentric' mitral valve regurgitation which complicates things. I am 71 and petrified of surgery but occasionally feel so weak that I can't walk. The pounding heart, head rushes, hot/cold sensations are no way to live. There's no predicting when these will occur so I stay close to home. I can be well enough one minute and grasping furniture to stay upright the next. I appear to be an outlier so don't base any decision to ask for a higher dose on my experience. Very best of luck to you.

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Thank you for your reply. I was prepared for surgery in April and decided to give Mavacamten a try first. A friend in Boston told me about a very helpful book and relaxation meditation to prepare for surgery. It really helped me stay calm. https://healfaster.com/
If needed I will use it again. I meditated twice a day! All the best to you. I also phoned Dr Peggy Huddleston, for a consult. She is very calming.

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Hi I'm an 81 yr old female who started on 5 mg camzyous in March.I had great improvement in breathing and energy and minimum side effects. SO GRATEFUL. In Aug my numbers were still not great and my Dr increased to 10 mg. I did not feel different and my numbers are fine. Hope you can have a similar experience.

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I’ve been on increased dose of 10mg for 3 weeks. I seem to have more energy most days. Next echo is Sept 6. Hoping the gradient improves.

I learned that some people metabolize the drug more quickly and need a higher dose. I hope that explains why my gradient has not improved. Fingers crossed.

Thanks for your message. I hope you continue to feel better!

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I'm 81 with HCM. I WAS
on 5 mg for aboyt 5 months..felt nuch better. My Dr increased to 10 mg because my nunbers still off. After about a month, my heart was stable and my energy is skowly increasing. The increaze really did NOT change how I waa feeling. Hope this encourages you and avoids surgery.

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