1. < Hypertrophic Cardiomyopathy (HCM)

Anyone take new drug Camzyos (mavacamten) for HCM?

Posted by captainterry @captainterry, May 25, 2022

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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manuelpo | @manuelpo | 1 day ago
In reply to @debra1954 "That’s amazing! I live in Myrtle Beach SC. Where did you find a cardiologist who is..." + (show)
@debra1954

That’s amazing! I live in Myrtle Beach SC. Where did you find a cardiologist who is “ licensed”? I have yet to find a cardiologist who will even discuss this medication let alone prescribe it.

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Hi @debra1954
If you call 1-833-628-7367 and provide them your zip code where you live, they can give you the name with a phone number of a "Camzyos certified Cardiologist" in your area so you can make an appointment with the Cardiologist.

Explain clearly to them your health condition such as HOCM (if you have that hypertrophic obstructive cardiomyopathy) and they can refer you to a great Cardiologist. I did search in Myrtle Beach, South Carolina and found that there is a "Grand Strand Heart and Vascular Care - Myrtle Beach" but I am not sure if they have a certified Camzyos Cardiologist. Just call the number noted above and they will help you. God bless you and I hope all works very well for you.

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junecc | @junecc | 1 day ago
In reply to @boatsforlife "Hi @junecc . You didn't specifically ask me about this but I will chime in anyway...." + (show)
@boatsforlife

Hi @junecc . You didn't specifically ask me about this but I will chime in anyway. I started Camzyos just over a year ago at age 59. I have never had any side effects whatsoever. I've been on Omeprazole for something like 10 years. I **think** both Tagamet and Omeprazole are used to treat the same kinds of problem. Omeprazole was one of the medications explicitly referred to in the Camzyos warnings. I had several conversations with my cardiologist, my pharmacist, my family doctor and my Camzyos REMS program nurse case manager, and all of them advised that, in my case, I could continue the Omeprazole while taking Camzyos but that I should (i) watch out for any problems - of which there have been none - and (ii) take the Omeprazole in the morning and the Camzyos at bedtime. I have no medical expertise and you should not take this as advise for you - listen to your experts, not the internet - but in my case there have been no issues except that I am no longer allowed my beloved grapefruit. Good luck with your treatment!

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Thank you so much for this positive feedback. I have concerns about the hassle factors for the first 3 months. I'm expecting my first shipment tomorrow, because of a call from Bristol Meyers Squibb. BMS told me I should be hearing from Cover My Meds. Nothing so far.
I read a few comments about headaches, but I'm going into this with a positive attitude. I'm an active 64 year old. I walk 25 miles a week and weight lift 3 times per week. I'm just having issues with stairs and hills. Who knows, maybe pickleball is in my future!
Thanks for the reply. I'll keep you posted.
Happy Thanksgiving to you and yours.
June

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junecc | @junecc | 14 hours ago
In reply to @captainterry "Still feeling great on camzyos after 2 years and 5 months on 2.5mg. No side effects..." + (show)
@captainterry

Still feeling great on camzyos after 2 years and 5 months on 2.5mg. No side effects to date. I take 3 generic meds for pressure, rate, and cholesterol. No other meds so no restrictions or reactions. Regarding costs and insurance arrangements, my cardiology support staff took care of setting that up along with the required clinical documentation. An experienced team with HOCM should know how to get that done.
Being older and on Medicare helps. This and a combination of a private Medicare Rx supplement I had, BMSquib, Healthwell Foundation, and CVS Specialty pharmacy got it done. This was all coordinated by my cardiology team with a little online paperwork by myself.
Blessings and God's speed.

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Hi Captainterry,

Do you know what your gradient was when you started on Camzyos? I just learned in June of 23 mine was zero while taking Norpace. This past August it was measured at 76. Why I'm going on Camzyos as soon as my insurance approves.

Thank you again,
June

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