1. < Hypertrophic Cardiomyopathy (HCM)
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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.

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rebaheizer | @rebaheizer | Oct 17 7:20am
In reply to @sandygood "I was recently diagnosed with HOCM. I get tested tomorrow at Mayo AZ! Need to know..." + (show)
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I was recently diagnosed with HOCM. I get tested tomorrow at Mayo AZ! Need to know what Medicare Part d covers Camzyos. Without coverage the medicine is cost prohibitive (almost $100,000 a year).

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@sandygood I have Aetna advantage and it is covered because I have met my out of pocket. Different states have different deals with different companies. Good luck-it’s good to look ahead. My out of pocket is changing the first of the year so I may have to change.

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walkinggirl | @walkinggirl | Oct 17 6:47pm
In reply to @bocellibonjovi71 "@karukgirl at Mayo in Jacksonville." + (show)
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@karukgirl at Mayo in Jacksonville.

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@bocellibonjovi71 I did not realize that septal myectomies took place in Mayo Jacksonville, even though it is a COE. How nice for our southern fellow big hearts! Wishing you a speedy recovery.

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bocellibonjovi71 | @bocellibonjovi71 | Oct 18 6:33pm

Ocala FL. Camzyos they had a bridge program while they. Work with ins. Company for approval. Covermymeds sent it for four months now my ins co covers it. Upcoming septal myectomy in 11 days.

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bocellibonjovi71 | @bocellibonjovi71 | Oct 18 6:34pm
In reply to @bocellibonjovi71 "29mm/2.9cm" + (show)
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29mm/2.9cm

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@bocellibonjovi71 anyone else have a septum this thick also? Late Diagnosis?

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janeal99 | @janeal99 | 1 day ago

Hello everyone. I'm a 69 year old male. I've been on Camzyos 5g for 4 months but I have some related issues.

First the good news. My gradient has improved from 165 to 27. Now, the more problematic part. I believe the improvement has significantly increased the blood flow through my heart which ( in my opinion ) has led to issues with high blood pressure, including an ER visit. I've never had a problem with hypertension, prior to starting Camzyos. The elevated BP readings started within 30 days following the start of my Camzyos regimen. I think I'm on the road to getting my BP stabilized. But I also have developed a significant increase in tinnitus in both ears, and a pounding in my stomach, both of which, are quite unsettling.

Anyone else had similar experiences, or suggestions otherwise? Thank you.

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boatsforlife | @boatsforlife | 1 day ago
In reply to @janeal99 "Hello everyone. I'm a 69 year old male. I've been on Camzyos 5g for 4 months..." + (show)
Profile picture for janeal99 @janeal99

Hello everyone. I'm a 69 year old male. I've been on Camzyos 5g for 4 months but I have some related issues.

First the good news. My gradient has improved from 165 to 27. Now, the more problematic part. I believe the improvement has significantly increased the blood flow through my heart which ( in my opinion ) has led to issues with high blood pressure, including an ER visit. I've never had a problem with hypertension, prior to starting Camzyos. The elevated BP readings started within 30 days following the start of my Camzyos regimen. I think I'm on the road to getting my BP stabilized. But I also have developed a significant increase in tinnitus in both ears, and a pounding in my stomach, both of which, are quite unsettling.

Anyone else had similar experiences, or suggestions otherwise? Thank you.

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@janeal99 - Hi! Welcome to the Camzyos family. I'm 61 male, on Camzyos for just over 2 years. After several months (I can't remember exactly how long), we discovered that my BP was a bit higher than normal. Nothing really bad but enough that my cardiologist put me on Losartan. Just had an echo done this morning and I was 111/73, and that's pretty typical for me now. With the incredible quality-of-life improvement I got from Camzyos, that extra med was a small price to pay (for me). Fortunately I have not had any other issues such as the tinnitus or the pounding you described, so I can't offer any useful advice. Those must be quite frustrating for you. Second thought - Do you have any gastro issues? I have been on Omeprazole for stomach acid for number of years. While Omeprazole was a possible red flag for Camzyos, I was given the go-ahead by the cardiologist, the pharmacists and the REMS program nurse case manager. I wonder if, perhaps, your stomach pounding would be related to an acid-aggravated gut somehow. But I am a simple civilian with NO medical training or expertise, so DO NOT listen to my speculations - talk to your doctor/cardiologist. Good luck, I hope you can get these side effects worked out and can experience only the good.

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Debra, Volunteer Mentor | @karukgirl | 23 hours ago
In reply to @janeal99 "Hello everyone. I'm a 69 year old male. I've been on Camzyos 5g for 4 months..." + (show)
Profile picture for janeal99 @janeal99

Hello everyone. I'm a 69 year old male. I've been on Camzyos 5g for 4 months but I have some related issues.

First the good news. My gradient has improved from 165 to 27. Now, the more problematic part. I believe the improvement has significantly increased the blood flow through my heart which ( in my opinion ) has led to issues with high blood pressure, including an ER visit. I've never had a problem with hypertension, prior to starting Camzyos. The elevated BP readings started within 30 days following the start of my Camzyos regimen. I think I'm on the road to getting my BP stabilized. But I also have developed a significant increase in tinnitus in both ears, and a pounding in my stomach, both of which, are quite unsettling.

Anyone else had similar experiences, or suggestions otherwise? Thank you.

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@janeal99 welcome to Mayo Clinic Connect. I'm glad you found this online support group, and sure enough, @boatsforlife has responded to you with his usual stellar advice. He's been on the Camzyos road for awhile and had a few speed bumps on that road...but he has given out sage advice based on experience and wisdom.
I echo his sentiments and would for sure bring these new symptoms up to your cardiologist and or your pharmacist...this drug can be a wonder drug for many, and for some they can't tolerate the side effects.
We are all different and respond differently to the same medication. I did not take Camzyos, I went straight to a septal myectomy, with zero regrets.
It's good you are paying attention to these symptoms, and you owe it to yourself to be your own best buddy and learn as much as you can and be your own advocate.
When is your next echo? If it's out there pretty far, I'd reach out to your doctor or pharmacist for reassurance.

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janeal99 | @janeal99 | 20 hours ago
In reply to @boatsforlife "Hello @marigold13 . I can't remember precisely what I have said over the 15'ish months so..." + (show)
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Hello @marigold13 . I can't remember precisely what I have said over the 15'ish months so I hope I don't contradict myself too badly. I do have obstructive HCM, and met the other criteria (age 59 at the time) so I was eligible for Camzyos, which has eliminated every single one of my symptoms. Pre-Camzyos, however, I would get badly winded walking a few blocks on flat ground, climbing a single flight of stairs, or even bending down to tie my shoes. Also, chest pain, dizziness, deafening heart pounding in my ears, fatigue - the works. What I thought was weird at the time, but have since learned that some of the other HCM'ers here had similar experiences, was that if I ate ANYTHING within a couple hours before those non-strenuous activities, the symptoms would be way worse. I would need to stop to rest a couple times on the stairs, or stop and lean on something after half a block of walking (so I wouldn't topple over), or rest for 5 minutes between left shoe and right. I had to plan my morning routine between shower, dressing, teeth, etc so that I wouldn't have to do stairs more than once. And I took to wearing my outside shoes in the house all day. I did find that I could eat something like one granola bar and it wouldn't make things too much worse, but nothing more than that. So I could either eat normally and have a hard time even getting out of the chair, or I could eat only enough to keep hunger pangs at bay, but be able to climb the stairs with only one rest stop. Over the period of about (I think) 12-16 months, I went from about 195 to 165 pounds strictly because I was eating so little. It certainly wasn't due to any exercise! Fast forward to Camzyos, and all of that has changed. I have (unfortunately) gained about 15 pounds of that back again and my only excuse is that I have resumed my role as the poster child for lazy. One more comment is about my use of the word fatigue: For me fatigue did not mean feeling like I needed more sleep - I hardly ever felt that. Rather, it meant feeling like I had done a huge workout (as if!). I had to lie down and not fight to move my arms or legs, each which felt like they were 200 pounds of deadweight. Does any of this sound like you? I hope you can find an effective treatment for your dizziness and all the rest. I remember too well how debilitating that became for me.

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@boatsforlife thank you for your response to my earlier post.

I've been scrolling the posts and this one caught my eye. Prior to starting my Camzyos journey, I had been experiencing the same kind of shortness of breath after eating. It was terrible. And as in your case, it didn't have to be a large meal. Eggs and toast would do it. I was having a hard time functioning. This went on for 2 years. The most frustrating part was that everyone listened, shook their heads, and said they'd never heard of anyone having similar experiences with HCM...

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