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.

Mentor
Debra, Volunteer Mentor | @karukgirl | Jun 9, 2023
In reply to @sunnyduke2 "Today I had to clean the house this morning. I took day to my heart rate..." + (show)
@sunnyduke2

Today I had to clean the house this morning. I took day to my heart rate heart rates been up over 100 115 when I get home I feel like right now it’s still at 100 101 102. I feel like weird, not spinning in the head just some kind of blow today. My backs been killing me because I did something to my SI joint pulled a muscle or something. It’s been hard for me to sleep the last couple days, but I’m doing OK I guess

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I hope you are feeling better today. Is your doctor easy to contact if you need to get ahold of them?

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darryl | @darryl | Jun 9, 2023
In reply to @jaymaysea "Hi Mary, I am scheduled to receive my first 35 day supply today. So I will..." + (show)
@jaymaysea

Hi Mary, I am scheduled to receive my first 35 day supply today. So I will be starting probably Saturday. Yes, there is still some reluctance/procrastination; I want to get some blood work done before I start to give me a baseline.

I have really been afraid to take the drug. But, this group has been a godsend. It has provided first hand, unbiased information, and given me the comfort level to move forward. I hope it does the same for you. The drug is not for everyone. But, I pray it works for us.

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I have been on Camzyos for 6 months and I feel so much better I take it before I go to bed and haven't noticed any side effects yet

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jaymaysea | @jaymaysea | Jun 9, 2023

I was wondering what the best time to take it was. Thanks so much for your comment. It’s comforting!

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1 reply
jess51 | @jess51 | Jun 9, 2023

It has been a while since I checked in - for good reason! I am 4 months into Camzyos and it has been a total (positive!) game -changer for me. I noticed that a few people have mentioned starting at the 5mg dose and then perhaps having the dose lowered. My Cardiologist mentioned that when I see him at the 6 month mark (two months from now) my dose will be lowered to 2.5 mg. I did not ask why - but I am curious. Does anyone know the answer to this? Obviously there was no immediate need to to do this, but this is the plan.... I'm curious...

I am so interested by each person's journey with their treatment - I really appreciate this forum

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1 reply
nbs | @nbs | Jun 9, 2023

I had my first echocardiogram since getting on Camzyos today and my doctor is changing my dose from the beginning 5 mg to 2.5 mg. This is my understanding as to why. Two areas they are most concerned with is the LVEF (Left ventricular ejection fraction). Mine went from 79% to 73% in the 3 1/2 weeks. They weren't concerned with this. The other area is the LVOT (Left Ventricular Outflow Tract Obstruction). Mine went from 100 mm HG to 16 mm HG. This is significant and caused the change in my prescription. The FDA does not want the LVOT to go below 20 mm HG. So, for my renewed prescription, I will go down to 2.5 mg. In four weeks I will have another echocardiogram. If my LVOT is still below 20 mm HG, I will be taken off of Camzyos and then rechecked four weeks later. If if stays at or above 20 mm HG my prescription will not change. Talk about change. I will say I haven't felt this great in years. So, let's see what happens over the month.

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1 reply
nbs | @nbs | Jun 9, 2023
In reply to @jess51 "It has been a while since I checked in - for good reason! I am 4..." + (show)
@jess51

It has been a while since I checked in - for good reason! I am 4 months into Camzyos and it has been a total (positive!) game -changer for me. I noticed that a few people have mentioned starting at the 5mg dose and then perhaps having the dose lowered. My Cardiologist mentioned that when I see him at the 6 month mark (two months from now) my dose will be lowered to 2.5 mg. I did not ask why - but I am curious. Does anyone know the answer to this? Obviously there was no immediate need to to do this, but this is the plan.... I'm curious...

I am so interested by each person's journey with their treatment - I really appreciate this forum

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Jess51, I answered your question about how they determine when to lower a dose in terms of how it was explained to me as a separate post.

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1 reply
avcowie | @avcowie | Jun 10, 2023

I’ve been taking Camzyos for two weeks now. I had no episode today but my ears ringing is driving me nuts.
My main concern is that this drug is a treatment, not a cure. I feel better today in general and it will help me improve my physical health in preparation for surgery. I’m going to talk to my cardiologist on Monday and request rescheduling my surgery date.

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1 reply
kelliw | @kelliw | Jun 10, 2023
In reply to @jaymaysea "I was wondering what the best time to take it was. Thanks so much for your..." + (show)
@jaymaysea

I was wondering what the best time to take it was. Thanks so much for your comment. It’s comforting!

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Good morning! I take it when I first wake up. That has worked out great for me. 🙂 I am excited for you to hopefully feel so much better!

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kelliw | @kelliw | Jun 10, 2023
In reply to @nbs "I had my first echocardiogram since getting on Camzyos today and my doctor is changing my..." + (show)
@nbs

I had my first echocardiogram since getting on Camzyos today and my doctor is changing my dose from the beginning 5 mg to 2.5 mg. This is my understanding as to why. Two areas they are most concerned with is the LVEF (Left ventricular ejection fraction). Mine went from 79% to 73% in the 3 1/2 weeks. They weren't concerned with this. The other area is the LVOT (Left Ventricular Outflow Tract Obstruction). Mine went from 100 mm HG to 16 mm HG. This is significant and caused the change in my prescription. The FDA does not want the LVOT to go below 20 mm HG. So, for my renewed prescription, I will go down to 2.5 mg. In four weeks I will have another echocardiogram. If my LVOT is still below 20 mm HG, I will be taken off of Camzyos and then rechecked four weeks later. If if stays at or above 20 mm HG my prescription will not change. Talk about change. I will say I haven't felt this great in years. So, let's see what happens over the month.

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That is good information. I was also changed to 2.5. My LVOT went from 75 to 8 in the first 60 days. I started taking Camzyos March 31st. My doctor didn't say anything about staying at 20, or taking me off. I was nervous about changing to 2.5 from 5 because I was feeling so good! I am feeling good at 2.5 thankfully. I so hope I don't have to stop taking it and start feeling horrible again. I am so happy you are also feeling great! My 3rd echo is on the 19th, so we shall see...

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Mentor
Debra, Volunteer Mentor | @karukgirl | Jun 10, 2023
In reply to @dbrima "Thank you. I will know in 2 weeks. She has had one of 3 tests for..." + (show)
@dbrima

Thank you. I will know in 2 weeks. She has had one of 3 tests for the septal myectomy.

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Hello @dbrima, I was wondering how your daughter is doing? Have you learned anything more from the tests? Praying for you both.

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