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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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I, too, had no benefit. I took obit for 8 months and had a septal myectomy 6 weeks ago. I feel better after the septal myectomy, although still recovering. I feel I wasted time. I was very sick on camzyos.
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1 ReactionPlease write again on this thread after your surgery. Would love to know how things went for you. May I ask how old you are and if you are an NYA class 3 or 4? Best of luck that you are scheduled before the holidays!
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1 ReactionYes, 30 days for it to be gone from your body. Camzyos has a two-week half-life. My understanding is that the other two weeks will be enough time for the other half to be washed out.
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1 ReactionMy Dr. Was helpful by talking to pharmacy & Ins Co. On my behalf. I took Camyzos for 5 mos. I was rediagnosed with Amylodosis by a different Dr. I am now on Vyndamax. In my case; and in my opinion my Drs. took too long to find the problem before I was properly treated. Good luck & God’s blessings.
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1 ReactionI was told my co-pay would be over $3500/month. Obviously I cannot afford that. I have received 30 days free for a trial and another 2 months on a grant and will be seeking financial assistance to get ready for the future. I’m very glad you managed to get the affordable co-pay.
It was quickly explained to me that the first month was over $7000 but my part would be over $3000. Each month the cost decreases and my personal costs would drop so at the end of a year my cumulative cost would be over $7000 which the prepaid $10000 card would cover. So far ( I just finished 4 month on Camzyos) this has been correct and I have paid nothing. My statements come from Medicare. In my opinion, the person who told me this probably also doesn’t have a complete understanding of the process. If you google “cost for Camzyos” you’ll find a variety of answers such as “The cost for Camzyos oral capsule 2.5 mg is around $8,426 for a supply of 30 capsules, depending on the pharmacy you visit “ Or $75,000 for the year or $49 a month with insurance, etc. Camzyos use is still in a study phase and as happy as I am that I can take it and it works for me BMS needS us as part of their study. It doesn’t work for so many people and I am sure BMS is trying to find out why.
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3 ReactionsTo clarify: I was told that the cost is $5000/month
Hello and thank you for your input. I’m curious about the funding you mentioned because I too received a foundation grant for $10,000 and was told that this grant would cover 2 months since the cost of 5 mg of Camzyos every day is $5000. How is it that your grant covers the cost for a year? I will be looking for grants continuously I guess for as long as I take this drug. Sigh.
Update
I stopped taking Camzyos 5 days ago since I was feeling even more tired and anxious on it. Today I feel better, just a bit more general muscle tightness and soreness than usual. My blood pressure medication is helping my heart stay as healthy as possible until the Camzyos is out of my system. Up to 30 days is what I read. Is that correct?
I am in month 4 of trying Camzyos. It seems to have a negative effect on exertion symptoms - the recovery is longer and symptoms come on abruptly. I have asked my cardiologist if I can stop taking it as I feel no benefit. Now waiting to hear from the prescribing cardiologist to stop and go back to Rythmodan. On the bright side during that same conversation Dr Ong is going to co-ordinate my surgery for septal myectomy and mitral valve repair. Fingers crossed it happens before Christmas 🤞🤞
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