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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 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 ReactionGood 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. 🙂
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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1 ReactionI 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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1 ReactionWho do you ask?
Thank you! I will definitely ask him. Have a great day. 🙂
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1 ReactionProbably 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 ReactionGood 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! 🙂
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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1 ReactionGood morning-That is such great news about your walk! I can't wait to feel like that! How many mg are you on, just out of curiosity? I want to learn as much as I can before I start taking it. I'm sure my doctor will start me off at the lowest dose? Thank you!