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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don69 | @don69 | Jul 28 5:33am

Thank you so much for your response I hope I have the same outcome as you have

REPLY
peggynurse | @peggynurse | Jul 28 9:21am
In reply to @boatsforlife "Hello again @don69. The drug has actually gone through very rigorous testing and approvals the same..." + (show)
@boatsforlife

Hello again @don69. The drug has actually gone through very rigorous testing and approvals the same as every other new medication. The FDA will have evaluated Camzyos and decided that, based on scientific evidence, it is worth approving. As to your other comments about false hope and the drug not doing anything for people with HCM, I would have to differ. Certainly there will be some people who don't respond well to it, but that is the same with every medication. Personally, I could not tolerate metoprolol, but it work tremendously well for many (most?) people. Using myself as the example again, Camzyos took me from being unable to climb stairs or even bend down to tie my shoes, and completely cleared up all of my obstructive HCM symptoms. As I said, the way I have read the hundreds of posts in this thread, Camzyos seems to be very beneficial for most of the folks here. Of course if you meant that it doesn't do anything for people with non-obstructive HCM, then you are correct. Unless something has changed recently, it is ONLY prescribed for obstructive HCM (oHCM or HOCM), and even just for a specific sub-set of those folks, and not for non-obstructive HCM.

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i’m curious about why you could not take Metroprol?
I’m on Metoprolol XL 25 mg. twice a day.
The cardiologist wants me to go to once a day for two weeks and then try to discontinue it in a month.
I don’t have shortness of breath, chest pain, etc. but I do have a lot of fatigue.
would appreciate anyone’s feedback that is on this medication.
The Camzyos has brought my numbers down to normal.

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2 replies
susanml | @susanml | Jul 28 10:50am
In reply to @boatsforlife "Hello again @don69. The drug has actually gone through very rigorous testing and approvals the same..." + (show)
@boatsforlife

Hello again @don69. The drug has actually gone through very rigorous testing and approvals the same as every other new medication. The FDA will have evaluated Camzyos and decided that, based on scientific evidence, it is worth approving. As to your other comments about false hope and the drug not doing anything for people with HCM, I would have to differ. Certainly there will be some people who don't respond well to it, but that is the same with every medication. Personally, I could not tolerate metoprolol, but it work tremendously well for many (most?) people. Using myself as the example again, Camzyos took me from being unable to climb stairs or even bend down to tie my shoes, and completely cleared up all of my obstructive HCM symptoms. As I said, the way I have read the hundreds of posts in this thread, Camzyos seems to be very beneficial for most of the folks here. Of course if you meant that it doesn't do anything for people with non-obstructive HCM, then you are correct. Unless something has changed recently, it is ONLY prescribed for obstructive HCM (oHCM or HOCM), and even just for a specific sub-set of those folks, and not for non-obstructive HCM.

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Hello
Having HCM, I have been on Camzyos since November of 2023. I started on 5 mg and then in March was reduced to 2.5 mg. because I was doing so well (my cardiologist was following the BMS protocol). However, I found that that dosage was not giving me the same visible results that the 5 had done so I asked to be put back up to 5 mg. I’ve done so well. No other medication has changed.The difference is amazing in that I can now walk up hills without getting winded plus, more importantly for me I regained my joie de vivre. I see my cardiologist next week and I hope that the tests show what I feel is a huge improvement. I’m 76.
This support group has been an endless source of information and encouragement.

REPLY
2 replies
boatsforlife | @boatsforlife | Jul 28 7:04pm
In reply to @peggynurse "i’m curious about why you could not take Metroprol? I’m on Metoprolol XL 25 mg. twice..." + (show)
@peggynurse

i’m curious about why you could not take Metroprol?
I’m on Metoprolol XL 25 mg. twice a day.
The cardiologist wants me to go to once a day for two weeks and then try to discontinue it in a month.
I don’t have shortness of breath, chest pain, etc. but I do have a lot of fatigue.
would appreciate anyone’s feedback that is on this medication.
The Camzyos has brought my numbers down to normal.

Jump to this post

Hi @peggynurse. Some 10'ish years ago, I was put on Metoprolol (no idea what dosage). Suddenly I could not stay awake more than about 6 hours. Did not matter how much I slept at night or what time I went to be or what time I woke up. After about 4 hours I would start to get foggy and sleepy, and by 6 hours I would be dozing off at my desk, or worse - behind the wheel! I ended up on short-work-days for a while until I changed from Metoprolol to Diltiazem (Tiazac). Within a week or so, my sleep situation was back to normal. Still on it today. My OHCM symptoms always included fatigue, but it was an "exhausted from a hard workout but I'm not sleepy" kind of fatigue rather than an "I just can't keep my eyes open" kind of fatigue - if that makes any sense.

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1 reply
peggynurse | @peggynurse | Jul 29 9:40am
In reply to @boatsforlife "Hi @peggynurse. Some 10'ish years ago, I was put on Metoprolol (no idea what dosage). Suddenly..." + (show)
@boatsforlife

Hi @peggynurse. Some 10'ish years ago, I was put on Metoprolol (no idea what dosage). Suddenly I could not stay awake more than about 6 hours. Did not matter how much I slept at night or what time I went to be or what time I woke up. After about 4 hours I would start to get foggy and sleepy, and by 6 hours I would be dozing off at my desk, or worse - behind the wheel! I ended up on short-work-days for a while until I changed from Metoprolol to Diltiazem (Tiazac). Within a week or so, my sleep situation was back to normal. Still on it today. My OHCM symptoms always included fatigue, but it was an "exhausted from a hard workout but I'm not sleepy" kind of fatigue rather than an "I just can't keep my eyes open" kind of fatigue - if that makes any sense.

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thank you so much for this information. Sounds exactly like me. And you are also on Camzyos?

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1 reply
boatsforlife | @boatsforlife | Jul 29 10:03am
In reply to @peggynurse "thank you so much for this information. Sounds exactly like me. And you are also on..." + (show)
@peggynurse

thank you so much for this information. Sounds exactly like me. And you are also on Camzyos?

Jump to this post

@peggynurse, yes I started Camzyos last September. I wish I could search for my first few posts to refer you to them but in summary, pre-Camzyos I could not climb a single flight of stairs without one or more rest stops, I couldn't bend down to tie my shoes without palpitations, dizziness, chest pain - the works. I lost something like 30 pounds because when I ate anything the symptoms were way worse - so I just quit eating. About 17 years of gradual deterioration. Within 12 days on Camzyos all of the symptoms were completely gone and my only excuse was that I have always been the poster-child for lazy. Started at 5mg and increased to 10mg. I don't feel a difference between 5 and 10, but my cardiologist is happier.

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don69 | @don69 | Jul 31 9:01am

I have not started Camzyos yet. I will comment on progress. I will start on 8/1/24

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manuelpo | @manuelpo | Jul 31 9:20am
In reply to @kalu2512 "Is this medication available in the United States through the Mayo Clinic. I’m a Vietnam veteran..." + (show)
@kalu2512

Is this medication available in the United States through the Mayo Clinic. I’m a Vietnam veteran 76 years old and I was diagnosed with hardening of the left ventricle. Does this medication act as a softener for the left ventricle?

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A Cardiologist that is "licensed to prescribe Camzyos" (very few are licensed on that medication) can prescribe you that medicine in the USA. The medication cost around $8,500 per month so you need to have some kind of health insurance with prescription benefits plan to see if they cover it. The insurance will direct you to a mail pharmacy that will mail you the medicine as far as I understand only in the USA, but find out if they may have changed it. The medication blocks the protein that feeds that muscle heart (called septum) to grow so the muscle starts getting thinner instead of softening. I felt in only 1 week a big difference in my heart with the angina being gone almost right away but my muscle was grown 2.2 cm which is almost blocking the whole lower part of my heart so now in 3 months is 1.4 cm so I am doing better. It does require the first 3 months a monthly echocardiogram then after that every 3 months echocardiogram so the doctor can calibrate the right dosage for you (5 mg, or maybe 10 mg, etc.) the doctor will adjust the dosage for you.

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1 reply
don69 | @don69 | Aug 10 8:52am
In reply to @karukgirl "Hello @kalu2512, First of all...thank you for serving your Country. It is because of brave men..." + (show)
@karukgirl

Hello @kalu2512,
First of all...thank you for serving your Country. It is because of brave men like you we are free!
Camzyos is a new drug approved for the treatment of Hypertrophic Obstructive Cardiomyopathy. It works by binding to myosin protein in the heart and allows the heart to relax.
Camzyos is available in the US, but not through the Mayo Clinic. Because Camzyos has some serious risks, it is part of a restrictive program and both you and your healthcare provider must be enrolled to participate. You can only get Camzyos through pharmacies that are also enrolled in the program called REMS (Risk Evaluation and Mitigation Strategy)
I am not familiar with the diagnosis of hardening of the left ventricle...do you know the actual medical term for this?

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My name is Don I live in the state of New Jersey been taking camzoia's for 4 days now have no side effects go back and forth weeks for echocardiogram and see what the prognosis is thank you

REPLY
1 reply
susanml | @susanml | Aug 11 9:52am
In reply to @susanml "Hello Having HCM, I have been on Camzyos since November of 2023. I started on 5..." + (show)
@susanml

Hello
Having HCM, I have been on Camzyos since November of 2023. I started on 5 mg and then in March was reduced to 2.5 mg. because I was doing so well (my cardiologist was following the BMS protocol). However, I found that that dosage was not giving me the same visible results that the 5 had done so I asked to be put back up to 5 mg. I’ve done so well. No other medication has changed.The difference is amazing in that I can now walk up hills without getting winded plus, more importantly for me I regained my joie de vivre. I see my cardiologist next week and I hope that the tests show what I feel is a huge improvement. I’m 76.
This support group has been an endless source of information and encouragement.

Jump to this post

Went to the cardiologist last week.When I first saw him last summer, my gradient was 79%. All I wanted to do was sit down and give up. As I said in my previous post, I started on Camzyos in November 2023 and seem to have found the correct dosage of 5 mg. The recent echocardiogram showed that the gradient was now 15%! The only medication different for me has been the Camzyos. Quite the impressive reduction, my cardiologist says. Wishing you all good health.

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