1. < Hypertrophic Cardiomyopathy (HCM)
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Reduced Camzyos dosage after first 4 weeks

Posted by nrshields @nrshields, Jun 20 10:17am

Has anyone on Camzyos ever had their doctor reduce dosage because the thickening was going down too fast? I just started on Camzyos 4 weeks ago and went for my first echo after starting the medicine. I was started on 5mg, my result was that my septal hypertrophy had gone from 2.0 cm to 1.6 cm.
He reduced my dosage from 5 mg to 2.5mg.

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joyrcc | @joyrcc | Jun 21 9:08am

I was on Camzyos 5mg the first month, dropped to 2.5mg the second month and stopped at the end of the third month due to my LVOT pressure dropping to 50% (which is outside the protocol). Maybe I didn't understand the cardiologist correctly but I thought the Camzyos only reduced the pressure from the left ventricle, but didn't change the obstruction itself. I felt great the second month so I was frustrated when I had to stop. I went for the septal myectomy in April rather than retry the med at 1.25mg.

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jilljan | @jilljan | Jun 21 9:27am

Yes. This is exactly what l experienced. But after my 12 week echo, went back up to 5 mg. Dosages change based on the protocols listed on the package insert with Camzyos. I am talking about the 12 page Highlights of Prescribing Information. Read it over carefully especially pages 2 and 3. This helped me better understand the reasons for dosage changes based on EF and gradients. I hope this is helpful.

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nrshields | @nrshields | Jun 21 10:43am
In reply to @jilljan "Yes. This is exactly what l experienced. But after my 12 week echo, went back up..." + (show)
Profile picture for jilljan @jilljan

Yes. This is exactly what l experienced. But after my 12 week echo, went back up to 5 mg. Dosages change based on the protocols listed on the package insert with Camzyos. I am talking about the 12 page Highlights of Prescribing Information. Read it over carefully especially pages 2 and 3. This helped me better understand the reasons for dosage changes based on EF and gradients. I hope this is helpful.

Jump to this post

Thank you, this definitely helped very much!

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nrshields | @nrshields | Jun 21 10:45am
In reply to @joyrcc "I was on Camzyos 5mg the first month, dropped to 2.5mg the second month and stopped..." + (show)
Profile picture for joyrcc @joyrcc

I was on Camzyos 5mg the first month, dropped to 2.5mg the second month and stopped at the end of the third month due to my LVOT pressure dropping to 50% (which is outside the protocol). Maybe I didn't understand the cardiologist correctly but I thought the Camzyos only reduced the pressure from the left ventricle, but didn't change the obstruction itself. I felt great the second month so I was frustrated when I had to stop. I went for the septal myectomy in April rather than retry the med at 1.25mg.

Jump to this post

Thank you, this made me feel a lot better.

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gregpt | @gregpt | Jun 22 11:29am
In reply to @joyrcc "I was on Camzyos 5mg the first month, dropped to 2.5mg the second month and stopped..." + (show)
Profile picture for joyrcc @joyrcc

I was on Camzyos 5mg the first month, dropped to 2.5mg the second month and stopped at the end of the third month due to my LVOT pressure dropping to 50% (which is outside the protocol). Maybe I didn't understand the cardiologist correctly but I thought the Camzyos only reduced the pressure from the left ventricle, but didn't change the obstruction itself. I felt great the second month so I was frustrated when I had to stop. I went for the septal myectomy in April rather than retry the med at 1.25mg.

Jump to this post

Same here. My surgery is Thursday.

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joyrcc | @joyrcc | Jun 22 9:38pm
In reply to @gregpt "Same here. My surgery is Thursday." + (show)
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Same here. My surgery is Thursday.

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Best wishes on Thursday @gregpt. I am SO glad I did!

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rebaheizer | @rebaheizer | Jun 23 6:54am
In reply to @gregpt "Same here. My surgery is Thursday." + (show)
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Same here. My surgery is Thursday.

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I think surgery is a better long time solution. I hope I have the option when I am still able to stand surgery! Good vibes and prayers to you! Let us know how things go!

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Debra, Volunteer Mentor | @karukgirl | Jun 23 8:52am
In reply to @gregpt "Same here. My surgery is Thursday." + (show)
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Same here. My surgery is Thursday.

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Hello @gregpt, I missed seeing your first post! So welcome to Mayo Clinic Connect. I'm glad you were able to join Connect before your surgery this coming Thursday.
Have you had a chance to read some of the posts here about open heart surgery and what to pack and what to expect?
Where is your surgery being performed?
Have you got all your questions for the team ready?

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gregpt | @gregpt | Jun 23 9:06am
In reply to @rebaheizer "I think surgery is a better long time solution. I hope I have the option when..." + (show)
Profile picture for rebaheizer @rebaheizer

I think surgery is a better long time solution. I hope I have the option when I am still able to stand surgery! Good vibes and prayers to you! Let us know how things go!

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Will do...thank you!

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gregpt | @gregpt | Jun 23 1:38pm
In reply to @karukgirl "Hello @gregpt, I missed seeing your first post! So welcome to Mayo Clinic Connect. I'm glad..." + (show)
Profile picture for Debra, Volunteer Mentor @karukgirl

Hello @gregpt, I missed seeing your first post! So welcome to Mayo Clinic Connect. I'm glad you were able to join Connect before your surgery this coming Thursday.
Have you had a chance to read some of the posts here about open heart surgery and what to pack and what to expect?
Where is your surgery being performed?
Have you got all your questions for the team ready?

Jump to this post

Thank you @karukgirl! My surgery is with Dr. Swistel @ NYU, I work in NYC as a physical therapist. Mayo Connect has been extremely helpful preparing for this and I'm very grateful to all of you for being so generous with your time sharing experiences and supporting one another!

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