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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Mentor
Debra, Volunteer Mentor | @karukgirl | Jun 12, 2023
In reply to @jaymaysea "I don’t actually see my Dr. until the end of July. But I have access to..." + (show)
@jaymaysea

I don’t actually see my Dr. until the end of July. But I have access to him through the patient portal. My monthly echos have been scheduled for 7/10, 8/7, and 9/4. I sent my Dr. a note this morning asking why he wanted me to take the Diltiazem for the next two weeks when it is counter indicated.

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Hmm...🤨 I would be a wee bit concerned as well. Good thinking on your part to contact him for confirmation...Did you ask him to verify this is correct? After you are the "trust by verify" member 😉

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nbs | @nbs | Jun 12, 2023
In reply to @jaymaysea "Good Morning HCM Family, I took my first Camzyos pill this morning. So begins my journey..." + (show)
@jaymaysea

Good Morning HCM Family, I took my first Camzyos pill this morning. So begins my journey to a better quality of life.

I am currently on Diltiazem (240mg) which is one of the drugs that is usually not recommended to be taken with Camzyos because it increases the risk of heart failure. My Dr. wants me to continue taking the Diltiazem with the Camzyos for 14 days. Has anyone else had a similar direction from their Dr. regarding a calcium channel blocker? I am the “trust by verify” member of the group.

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I had to get off my calcium blocker - Verapamil - two weeks before starting Camzyos.

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1 reply
jaymaysea | @jaymaysea | Jun 12, 2023

I don’t actually see my Dr. until the end of July. But I have access to him through the patient portal. My monthly echos have been scheduled for 7/10, 8/7, and 9/4. I sent my Dr. a note this morning asking why he wanted me to take the Diltiazem for the next two weeks when it is counter indicated.

REPLY
1 reply
Mentor
Debra, Volunteer Mentor | @karukgirl | Jun 12, 2023
In reply to @jaymaysea "Good Morning HCM Family, I took my first Camzyos pill this morning. So begins my journey..." + (show)
@jaymaysea

Good Morning HCM Family, I took my first Camzyos pill this morning. So begins my journey to a better quality of life.

I am currently on Diltiazem (240mg) which is one of the drugs that is usually not recommended to be taken with Camzyos because it increases the risk of heart failure. My Dr. wants me to continue taking the Diltiazem with the Camzyos for 14 days. Has anyone else had a similar direction from their Dr. regarding a calcium channel blocker? I am the “trust by verify” member of the group.

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While we wait for others to chime in on their experience and if they were taking Diltiazem at the same time, I just wanted to say I am thinking of you and hoping the best for you getting back your life! When do you see your doctor again?

REPLY
jaymaysea | @jaymaysea | Jun 12, 2023

Good Morning HCM Family, I took my first Camzyos pill this morning. So begins my journey to a better quality of life.

I am currently on Diltiazem (240mg) which is one of the drugs that is usually not recommended to be taken with Camzyos because it increases the risk of heart failure. My Dr. wants me to continue taking the Diltiazem with the Camzyos for 14 days. Has anyone else had a similar direction from their Dr. regarding a calcium channel blocker? I am the “trust by verify” member of the group.

REPLY
3 replies
Mentor
Debra, Volunteer Mentor | @karukgirl | Jun 10, 2023
In reply to @starbuck41 "Okay so it’s been a few days since I posted.. so here’s a recap. It’s day..." + (show)
@starbuck41

Okay so it’s been a few days since I posted.. so here’s a recap.
It’s day 20
Weight 266.7
5mg has been abnormally consistent at about 0807am every day, within minutes or seconds of previous days.
I’m on no specific diet but I’m prone to eat high protein in the from of Steak and always coffee in the am.
So labs..
Cholesterol was borderline high
Glucose was 112… pre diabetes
Everything else was in normal range
Blood pressure 102/86.. I have not taken beta blockers or bp meds since starting Camzyos. Still no outward side effects.. sleeping solid.. cardiologist appointment is tomorrow..will report back what he says..
Tonight’s menu
Ribeye, baked potatoe, ice tea, and some kinda green vegetable.. me and Murphy are gonna have steak n eggs for lunch..
Until tomorrow y’all have a wonderful day and stay safe
Dave

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Hey @starbuck41 , what did you learn from the cardiologist after your last visit? How is Murphy? Is he keeping an eye on you?

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Mentor
Debra, Volunteer Mentor | @karukgirl | Jun 10, 2023
In reply to @avcowie "I’ve been taking Camzyos for two weeks now. I had no episode today but my ears..." + (show)
@avcowie

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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Hi @avcowie, is tinnitus a known side effect of Camzyos? That would make anyone crazy 😮
I'm glad you are feeling better and see your doctor soon. Have you thought of the questions you want to ask the cardiologist? When is the surgery scheduled that you want to reschedule?

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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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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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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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