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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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HugInterested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.
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Thank you Justin!
There is no insurance for unemployed that is a PPO. They only have HMO that my Cardiologyst is out of network. In other words, I need a $20,000 budget for my HCM treatment which includes $8,500 a month for camzyos, $600 doctor follow up monthly visit and $350 copay per month for monthly echocardiogram to avoid open heart surgery that costs over $100,000.
I am very lucky I guess. I have been out of work for almost 3 years now. I wonder why I was born with this HypoCardioMyopathy now when I was not born to be millionare.
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3 ReactionsHello @manuelpo. Here is a link to learn more about Cigna PPO, https://www.cigna.com/individuals-families/shop-plans/plans-through-employer/ppo.
PPO stands for Preferred Provider Organization. I am not an insurance expert, but this type of insurance appears to be through an employer and not something you can opt into as an individual. You may need to contact your employer, or the insurance company directly to confirm this.
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2 ReactionsHello @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?