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 27, 2023

Has anyone flown on an airplane, while taking Camzyos?

kelliw | @kelliw | Mar 27, 2023

In reply to @benjaminallan1945 "Who do you ask?" + (show)

Good morning-I just received a call from MyNurse Navigator rep and he connected me to a nurse, but she didn't see anything written about flying or not, while taking Camzyos and my doctor doesn't know since I am the first patient. I have 2 trips coming up so hopefully I will be fine. 🙂

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)

I hear that!! Wishing you all the best.

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)

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!

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)

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.

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)

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. 🙂

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.

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.