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Anyone take new drug Camzyos (mavacamten) for HCM?
Since FDA approval in April has anyone (non-clinical trial patient) actually obtained a prescription and had it filled? If so, when and where was the cardiologist located? Is the registration process for doctor/patient/Rx taking a long time for this much anticipated drug?
Thanks from a fellow patient!
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Hello @manuelpo, and Welcome to Mayo Connect!
I'm happy you were able to find the Camzyos group and ask questions about coverage. I have zero information I can share, as I had to have open heart surgery for my HOCM, but hopefully another member can advise you on where to seek information about insurance coverage for this drug. I have read it is crazy expensive without being on the trial.
How long have you had HOCM? Is your cardiologist able to help you with insurance information?
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2 ReactionsI wonder if you have the weblink to purchase the Cigna PPO insurance so I can obtain coverage for Camzyos. I am in urgent need of that medicine. Thank you so much!
Not sure what your question means but to clarify : Camzyos is trade name for mavacamten. My understanding is that aficamten is the drug awaiting approval.
I’ve been fortunate to have no side effects from
Camzyos.
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1 ReactionHi I was just wondering if you meant mavacamten not afacamten because that is Camzyos. It is sold under the brand name Camzyos. I have been in it for 4 months now. My gradient do go down for month 2 and 3 but back up on month 4 so now they are increasing me from 5 to 10. I had terrible dizziness for awhile but it finally calmed down after about a month. I hope it doesn’t come back with the increase dose. Is there actually another drug awaiting approval? Glad the 15 is helping you now. Did you have any new side effects?
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1 ReactionThank you for replying. What are you going to do come off the? I actually feel worse since I have stopped them, I feel if has affected my heart not in a good way. At home resting waiting to see what my cardiologist says. I now am so out of breath I didn’t have that before and tummy swells after eating. I really wish I hadn’t taken them. Good luck
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2 ReactionsI also have a head that feels like a pressure cooker. I’m super tired and dizzy. Very low BP and not sleeping.
Thank you for getting back to me
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2 ReactionsWhat are your side effects if I may ask? Thanks.
Yes you may, terrible unbearable headaches as if my head was in a pressure cooker, jaw ache and not going to the loo to spend a penny. Stopped it and started again but they started again so I think surgery is the way now but feel worse off the drug now. Oh well wish you all well. Too bad it didn’t work for me. Is anyone else in here that takes verapamil and prednisone?
May I ask what side effects you are experiencing? I am not feeling well on it either but my dr keeps saying everything is fine because my heart is better
My Doc says my heart is running well, however I do get light headed a little more often and heart flutters more often. For me it's worth the trade off. I do not know yet how it will effect me when I get more active.