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!

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

nanamc1957 | @nanamc1957 | Nov 8, 2023
In reply to @boatsforlife "Welcome @susanml . The folks here are very supportive and it's a good place to see..." + (show)
@boatsforlife

Welcome @susanml . The folks here are very supportive and it's a good place to see what others have been experiencing with HOCM with or without Camzyos. You won't get medical advise here of course. I hope you have results as good as mine have been so far!

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Had my first thoracic scan since starting. My Dr was pleased that the left muscle has shrunk enough to no longer press on my mitral valve and the muscle has shrunk in 1 month

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nanamc1957 | @nanamc1957 | Nov 8, 2023
In reply to @karukgirl "@nanamc1957 that is next week!! I bet you are anxious and excited to find out if..." + (show)
@karukgirl

@nanamc1957 that is next week!! I bet you are anxious and excited to find out if it's doing what it's supposed to do! Keep us posted, okay?

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Well great news the muscle is shrinking and is not squishing the valve

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Mentor
Debra, Volunteer Mentor | @karukgirl | Nov 9, 2023
In reply to @susanml "Good day all. I’m waiting to start Camzyos after being diagnosed HCM 6 months ago. I’ve..." + (show)
@susanml

Good day all. I’m waiting to start Camzyos after being diagnosed HCM 6 months ago. I’ve gone down hill quickly and other drugs have not helped. I’m anxiously waiting to get my life back. All the best Susan in Canada.

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Hello @susanml, and Welcome to Mayo Connect! Like @boatsforlife mentioned, this is a very supportive support group. The Camzyos people are super helpers. They share with each other the things they have learned about this new drug protocol and are happy to reach out to help you too. There are many in the Camzyos group from Canada, so you are in good company.
I am so sorry to hear you have gone down hill so quickly. That must be frightening and very concerning. And just finding out six months ago too! When do you begin Camzyos?

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Mentor
Debra, Volunteer Mentor | @karukgirl | Nov 9, 2023
In reply to @boatsforlife "Hello again Camzyos family. An update at the 6 week mark. I feel ... GREAT! Noticed..." + (show)
@boatsforlife

Hello again Camzyos family. An update at the 6 week mark. I feel ... GREAT! Noticed some possible positive effects after the first couple days then a bit of a wobble around days 10-12, and since that time it has been the most amazingly smooth sailing I could have hoped for. Sometimes I forget and start walking a little too briskly and feel some minor effects - just exactly what one might expect from being 15 years without any real kind of exercise. I have no idea what my numbers are from my pre-Camzyos echo and my 4 week echo, and I'm intentionally not finding out. I know how easily I can psych myself out trying to understand all the stuff in anything like an echo report - especially with my medical degree from the School of Google. My cardiologist has been asking how I am feeling, and is replying with positive comments and has not changed my dosage yet, so I am content to let him do his job at this point. Saw my family doctor last week and told her how great I am feeling. She said it was probably too early to see much in the numbers yet, and then it was fun watching her jaw hit the floor when she compared the 2 echos. So I'm just riding a high for now.

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@boatsforlife that is amazing news!! I love how you said it was fun watching your doctors reaction after thinking it was too early to show any changes and then she compared the echo!
And how great to be able to start getting out and start exercising after not being able to for 15 years. Walking is so good for you and I hope you continue getting great results. Thanks for updating the group!

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Mentor
Debra, Volunteer Mentor | @karukgirl | Nov 9, 2023
In reply to @nanamc1957 "Well great news the muscle is shrinking and is not squishing the valve" + (show)
@nanamc1957

Well great news the muscle is shrinking and is not squishing the valve

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Yay! It seems like Camzyos is working for you! You must be feeling better too?

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nanamc1957 | @nanamc1957 | Nov 9, 2023
In reply to @karukgirl "Yay! It seems like Camzyos is working for you! You must be feeling better too?" + (show)
@karukgirl

Yay! It seems like Camzyos is working for you! You must be feeling better too?

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I actually can breathe and start walking again

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Mentor
Debra, Volunteer Mentor | @karukgirl | Nov 10, 2023
In reply to @nanamc1957 "I actually can breathe and start walking again" + (show)
@nanamc1957

I actually can breathe and start walking again

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Unless you know what it's like, it is difficult to explain to others. I know exactly what you mean. It's not only frightening to be short of breath like that, but disabling too! How wonderful to be able to walk and not fear being short of breath.

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nbs | @nbs | Nov 13, 2023

I had a brief period recently of having the typical symptoms of OHCM (breathing issues when walking /going up stairs, chest pressure, etc). My cardiologist instantly had me get an echo - everything is great. My son said to me, "don't you become anemic?". Six days on iron and I was back to normal and my blood workup did came back that I was anemic. My cardiologist is thrilled that Camzyos has now been working since June and my internist isn't thrilled that I was anemic but I am. Sometimes hoofbeats are not zebras but horses.

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deanna529 | @deanna529 | Nov 16, 2023

UPenn
NYU
Morristown NJ Hospital
I have been to doctors at all three places. I was on it for 6 months.
Good luck to you.

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markmayo | @markmayo | Nov 17, 2023

I'm fixin to start Camzyos soon so they did an echo yesterday. The nurse went out and got the other nurse who did my previous echo to have her look at it. She tried a few things and they pulled up my previous echo. They didnt include me in the discussion but it seems like they couldnt find the obstruction this time. I have seen the valve leaflets folding back over the wrong outlet blocking flow at the end of pump for the last 12 years and while I was on mavacamten clinic trial for 6 months. When I asked them "Does that mean I'm cured?" they said my doctor would talk to me. Do you know if Camzyos is only prescribed for obstruction or if it can be used for ordinary HCM to help slow hard pumping or help reduce septum thickness?

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