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 | Jun 20 10:08am
In reply to @hollywood50 "Hi jess. I am 69 years old. I am pretty sure this was hereditary. I did..." + (show)
@hollywood50

Hi jess. I am 69 years old. I am pretty sure this was hereditary. I did take genetic testing, To see if we could pinpoint the gene. But they could not pinpoint it. I have two sons one suns bent tested negative for it. My other son has not gone yet. Do you know if yours was genetic?

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Good morning! My dad has HCM and I inherited it, but my brother didn't. My dad has a very mild case, I unfortunately have a severe case and needed Camzyos. I am so very thankful I have my life back, since starting Camzyos in March 2023!

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walkinggirl | @walkinggirl | Jun 19 1:29pm
In reply to @hollywood50 "Hi jess. I am 69 years old. I am pretty sure this was hereditary. I did..." + (show)
@hollywood50

Hi jess. I am 69 years old. I am pretty sure this was hereditary. I did take genetic testing, To see if we could pinpoint the gene. But they could not pinpoint it. I have two sons one suns bent tested negative for it. My other son has not gone yet. Do you know if yours was genetic?

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Yes, HCM is genetic. In 9/2022 I was tested - none of the 123 genes known to cause HCM at that time was mutated. I was told to recheck in about 5 years because new HCM genes may be discovered. Meanwhile, my son and grandson (aged 46 and 12 at the time), did have echocardiograms out of an abundance of caution. My cardiologist advised me to tell them to have that done about every 5 years. Until the genetics are conclusive and we can pinpoint the gene to study, it's a proactive plan. I was in my late 50's/early 60's when I was diagnosed.

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hollywood50 | @hollywood50 | Jun 19 10:14am
In reply to @stayhealthy2 "I too am delighted with less symptoms after taking Camzyos for 1 1/2 months. After less..." + (show)
@stayhealthy2

I too am delighted with less symptoms after taking Camzyos for 1 1/2 months. After less than a week, initially, I had noticeable improvement.

Jump to this post

Hi jess. I am 69 years old. I am pretty sure this was hereditary. I did take genetic testing, To see if we could pinpoint the gene. But they could not pinpoint it. I have two sons one suns bent tested negative for it. My other son has not gone yet. Do you know if yours was genetic?

REPLY
2 replies
stayhealthy2 | @stayhealthy2 | Jun 18 9:40am
In reply to @captainterry "Jess: I am a 73 year old male with a long standing diagnosis of Obstructive HCM...." + (show)
@captainterry

Jess: I am a 73 year old male with a long standing diagnosis of Obstructive HCM. Over time my HCM progressed and I experienced the expected symptoms and clinical data of progressive heart failure. I am otherwise in generally good health, but my heart condition required significant and frustrating adjustments to my activities of daily living.
GOOD NEWS! I began Camzyos in May 2022. After three daily 5mg doses all symptoms were gone. I thought it was psychosomatic! Now after 7 months all is still excellent and after a couple of months the dosage was reduced to 2.5mg daily. I have been under a very strict protocol of monitoring and testing (MD visits, echos, and EKG).
Camzyos does not work for everyone and might he dangerous for some. But it is worth a try under expert supervision and careful follow up.
Camzyos has been a life changer for me! I can only thank God, my cardiology specialist in HCM, and his team in Memphis, Tn. And, the increadible brains that invented this new drug!
Peace!

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I too am delighted with less symptoms after taking Camzyos for 1 1/2 months. After less than a week, initially, I had noticeable improvement.

REPLY
1 reply
hollywood50 | @hollywood50 | Jun 17 6:11pm

Hi, Yes, I been taken this medication for over a year now. Starting with 5mg. Now at 10mg Keeps my obstructive open. Echo, is good Each month. And I have a implant ICD. this drug works for me.

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kelliw | @kelliw | Jun 17 10:30am
In reply to @montanamoon "I needed to hear this! Thank you. I will share with my cardiologist. Happy you’re having..." + (show)
@montanamoon

I needed to hear this! Thank you.
I will share with my cardiologist.
Happy you’re having good results. The hope helps tremendously.

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Good morning! I have had the exact experience that boatsforlife has had and still going strong! Camzyos has been a miracle for me! 🙂 I have been on it since March 31, 2023.

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montanamoon | @montanamoon | Jun 17 8:55am
In reply to @karukgirl "Mayo Clinic Rochester is the world's leader in HCM/HOCM and the treatment for it. It may..." + (show)
@karukgirl

Mayo Clinic Rochester is the world's leader in HCM/HOCM and the treatment for it. It may mean a plane trip, but you are worth it! I'm glad to hear your echo showed improvement, but I would still encourage you to be on the lookout and watchful over your own health...you know you better than anyone else 🙂

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Today will be spent searching for a COE or a cardiologist more experienced in Camzyos.
I will be reaching out to the Mayo Clinic in Rochester. The clinic is only a 12 hour drive.
Thank you so much!

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montanamoon | @montanamoon | Jun 17 8:44am
In reply to @boatsforlife "Hi @montanamoon and welcome. I'll just chime in here to tell you that I had progressively..." + (show)
@boatsforlife

Hi @montanamoon and welcome. I'll just chime in here to tell you that I had progressively work oHCM symptoms over about 17 years. To the point where I would have to take 2 breaks going up a single flight of stairs, couldn't bend over to tie my shoes without palitations, dizziness, chest pain,..... After 2 (yes, two) days on Camzyos I was noticing "hey, that should have hurt a lot more... but after just 2 days, it must be in my head." By day 12, I had NO symptoms whatsoever. So for the lucky some of us it works hard and FAST. Maybe (hopefully) you are one of us. Keep the faith!

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I needed to hear this! Thank you.
I will share with my cardiologist.
Happy you’re having good results. The hope helps tremendously.

REPLY
1 reply
boatsforlife | @boatsforlife | Jun 16 6:29pm
In reply to @montanamoon "Thank you so much for your reply. He finally called me with the results of my..." + (show)
@montanamoon

Thank you so much for your reply. He finally called me with the results of my ECHO.
He said it looked better than the previous one I had done in Montana. I left a very good COE to make this move.
I was on Camzyos 6 days before this ECHO…. I don’t feel it works that fast. He nor the staff knew what/how to set me up with REMS correctly as they only had on person on Camzyos before he prescribed it.
He is in a clinic with other Cardiologists.
I will check for a COE!
Thanks again you have helped!

Jump to this post

Hi @montanamoon and welcome. I'll just chime in here to tell you that I had progressively work oHCM symptoms over about 17 years. To the point where I would have to take 2 breaks going up a single flight of stairs, couldn't bend over to tie my shoes without palitations, dizziness, chest pain,..... After 2 (yes, two) days on Camzyos I was noticing "hey, that should have hurt a lot more... but after just 2 days, it must be in my head." By day 12, I had NO symptoms whatsoever. So for the lucky some of us it works hard and FAST. Maybe (hopefully) you are one of us. Keep the faith!

REPLY
1 reply
Mentor
Debra, Volunteer Mentor | @karukgirl | Jun 16 3:01pm
In reply to @montanamoon "Thank you so much for your reply. He finally called me with the results of my..." + (show)
@montanamoon

Thank you so much for your reply. He finally called me with the results of my ECHO.
He said it looked better than the previous one I had done in Montana. I left a very good COE to make this move.
I was on Camzyos 6 days before this ECHO…. I don’t feel it works that fast. He nor the staff knew what/how to set me up with REMS correctly as they only had on person on Camzyos before he prescribed it.
He is in a clinic with other Cardiologists.
I will check for a COE!
Thanks again you have helped!

Jump to this post

Mayo Clinic Rochester is the world's leader in HCM/HOCM and the treatment for it. It may mean a plane trip, but you are worth it! I'm glad to hear your echo showed improvement, but I would still encourage you to be on the lookout and watchful over your own health...you know you better than anyone else 🙂

REPLY
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