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.

williampconley | @williampconley | Nov 1, 2023
In reply to @karukgirl "Welcome @williampconley! I am so glad you are here and shared your Camzyos story with the..." + (show)
@karukgirl

Welcome @williampconley! I am so glad you are here and shared your Camzyos story with the group. You must feel pretty happy about those results from your echo. There a so many great members on here who share your same story, and they have been so helpful to one another in the ups and downs of Camzyos. I hope you do well on the lowered dose, and thankfully you have another echo coming up in three weeks. When were you diagnosed with HOCM?

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Thanks for your reply !
I was diagnosed in July (by echo)...pretty quickly after reporting minor symptoms to my primary care Dr.
Met with the Lahey team in Sept ... GREAT team !!
Now here I am Nov 1 ! As far as diagnosis and getting a plan together, not bad. Of course, surgery was suggested as the other option, but I chose to give Camzyos a chance first !

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1 reply
dwc62 | @dwc62 | Nov 1, 2023
In reply to @boatsforlife "Welcome @dwc62 . Lots of supportive people here to bounce questions and concerns with. I just..." + (show)
@boatsforlife

Welcome @dwc62 . Lots of supportive people here to bounce questions and concerns with. I just started Camzyos exactly 5 weeks ago today. So far I'm one of the lucky ones who have had only positive side effects. Within just a couple days my symptoms were starting to vanish, and since the 2 week point I have not experienced a single instance of palpitations, dizziness, chest pain, or any of the other things that had been dogging me for 17 years. I now just live in fear that this is too good to be true and Rod Serling is going to jump out from behind a bush and say "just kidding." Seriously, if it continues like this, it's a miracle drug for me. If you are on this path, I hope you have the same results.

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Understand the twilight zone, however some times luck changes, I hope things continue going well for you.

David

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dwc62 | @dwc62 | Nov 1, 2023
In reply to @JustinMcClanahan "Hello @dwc62, I'd like to add my welcome to @karukgirl's. I moved your discussion and combined..." + (show)
@JustinMcClanahan

Hello @dwc62, I'd like to add my welcome to @karukgirl's. I moved your discussion and combined it with the discussion @karukgirl shared, titled: "Anyone take new drug Camzyos (mavacamten) for HCM?
"- https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/.

I did this so you could meet the many members sharing their experience taking Camzyos like @newtosohcm and @whidbey.

@dwc62, if you are comfortable sharing, were you recently prescribed Camzyos or are you just trying to learn more about it before you start a new medication?

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I will be starting camzyos next Wednesday or Thursday.

David

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markmayo | @markmayo | Nov 1, 2023
In reply to @karukgirl "Ahh, so you are still blind...that must be frustrating, but at least you know why you..." + (show)
@karukgirl

Ahh, so you are still blind...that must be frustrating, but at least you know why you haven't heard. Not that that is helpful to you right now, right? So what is your plan, do you start Camzyos now? There are so many good stories here about it. Some not so good either, but at least you will be in good company.

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I am planning to try Camzyos. I didn't feel at all different before, during, or after the clinical trial so I think I was placebo. When he did screening exam for the trial he said at that time "he wouldn't recommend referral for septal reduction". I'm hoping Camzyos and losing 100 lb will help me get around better without open heart surgery. So far I'm down 20 lb in 2 months.

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Mentor
Debra, Volunteer Mentor | @karukgirl | Nov 1, 2023
In reply to @williampconley "I've been on Camzyos for 30 days. I have HoCM , septum = 16-17mm. No miraculous..." + (show)
@williampconley

I've been on Camzyos for 30 days.
I have HoCM , septum = 16-17mm.
No miraculous symptoms reduction to report, but my symptoms are on the mild side.
Chest discomfort and light headedness when going up hills or stairs.
General chest discomfort, sometimes while doing nothing.
But ...had my first (post med) echo last Friday and my Gradient went from 35/50mmHg (rest, Valsalva) to 13/17 !!
Based on the algo, I just went from 5mg to 2.5mg.
Next echo 11/22 ...

Jump to this post

Welcome @williampconley! I am so glad you are here and shared your Camzyos story with the group. You must feel pretty happy about those results from your echo. There a so many great members on here who share your same story, and they have been so helpful to one another in the ups and downs of Camzyos. I hope you do well on the lowered dose, and thankfully you have another echo coming up in three weeks. When were you diagnosed with HOCM?

REPLY
2 replies
williampconley | @williampconley | Nov 1, 2023

I've been on Camzyos for 30 days.
I have HoCM , septum = 16-17mm.
No miraculous symptoms reduction to report, but my symptoms are on the mild side.
Chest discomfort and light headedness when going up hills or stairs.
General chest discomfort, sometimes while doing nothing.
But ...had my first (post med) echo last Friday and my Gradient went from 35/50mmHg (rest, Valsalva) to 13/17 !!
Based on the algo, I just went from 5mg to 2.5mg.
Next echo 11/22 ...

REPLY
3 replies
Mentor
Debra, Volunteer Mentor | @karukgirl | Nov 1, 2023
In reply to @nanamc1957 "I've been taking for 3 weeks have my first echo on 11/8." + (show)
@nanamc1957

I've been taking for 3 weeks have my first echo on 11/8.

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@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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1 reply
nanamc1957 | @nanamc1957 | Nov 1, 2023
In reply to @karukgirl "https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/ Hi back at you @dwc62 and WELCOME to Mayo Connect! I have posted a link..." + (show)
@karukgirl

https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
Hi back at you @dwc62 and WELCOME to Mayo Connect!
I have posted a link for you regarding all things Camzyos here on Mayo Connect. Take a look around that support group and you will learn many things Camzyos related. There are a lot of new members in this support group, as Camzyos is relatively new on the scene as a treatment for HOCM (hypertrophic obstructive cardiomyopathy) and there is success with it's use and some failures as well. Are you on, or being considered for Camzyos?

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I've been taking for 3 weeks have my first echo on 11/8.

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1 reply
Mentor
Debra, Volunteer Mentor | @karukgirl | Nov 1, 2023
In reply to @markmayo "The coordinator finally replied and said it hasn't been unblinded yet and may be a couple..." + (show)
@markmayo

The coordinator finally replied and said it hasn't been unblinded yet and may be a couple years. She said when it is unblinded they will try to contact everyone.

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Ahh, so you are still blind...that must be frustrating, but at least you know why you haven't heard. Not that that is helpful to you right now, right? So what is your plan, do you start Camzyos now? There are so many good stories here about it. Some not so good either, but at least you will be in good company.

REPLY
1 reply
markmayo | @markmayo | Nov 1, 2023
In reply to @karukgirl "Hello @markmayo, and WELCOME to Mayo Connect! I tried to join the study you mention, but..." + (show)
@karukgirl

Hello @markmayo, and WELCOME to Mayo Connect! I tried to join the study you mention, but it was too late and had already started when I found out I had HOCM. I ended up having a septal myectomy at Mayo Rochester 3 years ago. Hypertensive therapy did not work for me. But the septal myectomy did!
I have absolutely no knowledge of clinical studies, blind-studies, double-blind studies, etc. but I did a itsy bitsy bit of research just now and if I understood correctly, in a double-blind study neither you nor your doctor knows if you are taking the drug or the placebo. You are both blind. At the end of the study, you are 'un-blinded' so you do know which you were on. Again, disclaimer...I have virtually zero knowledge about how studies work. So if the study is over, you should be notified. Do you know if the study is done? I would be super frustrated and want to know too!! When do you start Camzyos?

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The coordinator finally replied and said it hasn't been unblinded yet and may be a couple years. She said when it is unblinded they will try to contact everyone.

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