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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kelliw | @kelliw | Mar 19, 2023
In reply to @jess51 "Good Morning from the west coast. I am on a 5mg dose for now. 5 mg..." + (show)
@jess51

Good Morning from the west coast.
I am on a 5mg dose for now. 5 mg seems to be a common starting dose (although I think 2.5 is the smallest dose). I had my one month "echo" 5 days ago and my cardiologist maintained the 5mg dose for me. I think that i will have monthly echocardiagrams for another couple of months and then less often. I am so grateful for Canada's socialized medical system!
All the best!

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Good morning-I have another question-Can I fly in an airplane while I am on Camzyos? Can I have an occasional glass of wine? Or better not to have any alcohol? Thank you! 🙂

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jess51 | @jess51 | Mar 20, 2023

Probably best to ask your doctor those questions. I don't recall hearing anything about flying . I drink VERY little these days and certainly not daily- just a tiny bit of wine or beer on occasion. let me know how this all works out for you!

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1 reply
kelliw | @kelliw | Mar 21, 2023
In reply to @jess51 "Probably best to ask your doctor those questions. I don't recall hearing anything about flying ...." + (show)
@jess51

Probably best to ask your doctor those questions. I don't recall hearing anything about flying . I drink VERY little these days and certainly not daily- just a tiny bit of wine or beer on occasion. let me know how this all works out for you!

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Thank you! I will definitely ask him. Have a great day. 🙂

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klima12 | @klima12 | Mar 26, 2023

I am 46 years old and was diagnosed with HCM 4 years ago. I reside in Manitoba Canada and I will hopefully be starting this medication very soon. There was a lot of confusion at first. I went for my baseline echo a week ago at a private clinic as the hospital have a 9 month wait. I have two insurances and neither will cover the costs. I am working with Bayshore and they are helping with the cost and arranging my Echocardiograms. I will post an update once I have started treatment. Here’s to hoping it improves my quality of life.

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klima12 | @klima12 | Mar 26, 2023

I have been waiting forever to receive this drug. It appears dr in Canada we’re not prepared for the work involved in prescribing this.

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kelliw | @kelliw | Mar 27, 2023
In reply to @klima12 "I am 46 years old and was diagnosed with HCM 4 years ago. I reside in..." + (show)
@klima12

I am 46 years old and was diagnosed with HCM 4 years ago. I reside in Manitoba Canada and I will hopefully be starting this medication very soon. There was a lot of confusion at first. I went for my baseline echo a week ago at a private clinic as the hospital have a 9 month wait. I have two insurances and neither will cover the costs. I am working with Bayshore and they are helping with the cost and arranging my Echocardiograms. I will post an update once I have started treatment. Here’s to hoping it improves my quality of life.

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Good morning! I hope everything works out quickly for you! I just enrolled Friday, while I was at my cardiology appt. Bristol Meyers Squibb sent 3 reps out to my dr's office to coach him and his assistant, as I am the 1st patient to start this program, in their practice! I am hoping to start this week! I am so hoping and praying this works! I will post as soon as I start it too. 🙂

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1 reply
klima12 | @klima12 | Mar 27, 2023
In reply to @kelliw "Good morning! I hope everything works out quickly for you! I just enrolled Friday, while I..." + (show)
@kelliw

Good morning! I hope everything works out quickly for you! I just enrolled Friday, while I was at my cardiology appt. Bristol Meyers Squibb sent 3 reps out to my dr's office to coach him and his assistant, as I am the 1st patient to start this program, in their practice! I am hoping to start this week! I am so hoping and praying this works! I will post as soon as I start it too. 🙂

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I am the first person in Manitoba to start it but no one has come out to meet me or fully explained it to me.

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1 reply
kelliw | @kelliw | Mar 27, 2023
In reply to @klima12 "I am the first person in Manitoba to start it but no one has come out..." + (show)
@klima12

I am the first person in Manitoba to start it but no one has come out to meet me or fully explained it to me.

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I am in Southern California. I just got an email that MyNurse Navigator will be calling me soon! The ball is rolling! I so want to feel better and get back to my normal self!

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1 reply
klima12 | @klima12 | Mar 27, 2023
In reply to @kelliw "I am in Southern California. I just got an email that MyNurse Navigator will be calling..." + (show)
@kelliw

I am in Southern California. I just got an email that MyNurse Navigator will be calling me soon! The ball is rolling! I so want to feel better and get back to my normal self!

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I hear that!! Wishing you all the best.

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