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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elmore71111 | @elmore71111 | Jun 28, 2023
In reply to @jaymaysea "Thank you so much for asking. The dizziness has subsided, thank goodness. But, I am still..." + (show)
Profile picture for jaymaysea @jaymaysea

Thank you so much for asking. The dizziness has subsided, thank goodness. But, I am still fatigued and a little short of breath on exertion. Overall, I am feeling better.

My results from the echo on Friday showed my heart’s pumping performance was normal. My left ventricular ejection fraction (LVEF), was 60-65% (normal range: 55-70%). So my cardologist said it was safe to stay the course with Camzyos and that he expected that I would feel better as it reaches more peak effect with time.

He also said I could now stop diltiazem. I did not tell him yet that I had stopped the second day 😜because it’s counter-indicated. My heart rate is still up. So, he said we should discuss a low dose of Metoprolol. It’s also counter-indicated for Camzyos. Does anyone in the group take a beta blocker while on Camzyos?

Prior to starting Camzyos, my obstruction was only mild at rest, but severe post-exercise obstruction around 230 mmHg. I had a limited echo on Friday. So I will be very interested to do a stress echo after I have been on Camzyos for a while.

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I just started taking camzyos yesterday, but I am on a beta blocker, when I spoke with the clinical nurse navigator from camzyos and the pharmacist from the specialty pharmacy, they both said that was fine. I really hope you continue to feel better with each passing day! I just started, so I’m hoping and praying this works! This has truly been such a nerve wracking journey and I hate to hear how much added stress you’ve had to deal with!

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jaymaysea | @jaymaysea | Jun 27, 2023

Thank you @nbs. I recall you had to get off Verapamil two weeks before starting Camzyos. It was one of the reasons I questioned taking Diltiazem. They are both calcium blockers and on the BMS list of “usually not recommended”.

Metoprolol is a beta blocker and is not on the BMS list. My cardologist mentioned putting me on a low dose since my heart rate and blood pressure are both up.

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nbs | @nbs | Jun 27, 2023
In reply to @jaymaysea "Thank you so much for asking. The dizziness has subsided, thank goodness. But, I am still..." + (show)
Profile picture for jaymaysea @jaymaysea

Thank you so much for asking. The dizziness has subsided, thank goodness. But, I am still fatigued and a little short of breath on exertion. Overall, I am feeling better.

My results from the echo on Friday showed my heart’s pumping performance was normal. My left ventricular ejection fraction (LVEF), was 60-65% (normal range: 55-70%). So my cardologist said it was safe to stay the course with Camzyos and that he expected that I would feel better as it reaches more peak effect with time.

He also said I could now stop diltiazem. I did not tell him yet that I had stopped the second day 😜because it’s counter-indicated. My heart rate is still up. So, he said we should discuss a low dose of Metoprolol. It’s also counter-indicated for Camzyos. Does anyone in the group take a beta blocker while on Camzyos?

Prior to starting Camzyos, my obstruction was only mild at rest, but severe post-exercise obstruction around 230 mmHg. I had a limited echo on Friday. So I will be very interested to do a stress echo after I have been on Camzyos for a while.

Jump to this post

I am still on Metoprolol and have been on it since the beginning (six weeks). I will ask why.

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1 reply
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jaymaysea | @jaymaysea | Jun 27, 2023

Thank you so much for asking. The dizziness has subsided, thank goodness. But, I am still fatigued and a little short of breath on exertion. Overall, I am feeling better.

My results from the echo on Friday showed my heart’s pumping performance was normal. My left ventricular ejection fraction (LVEF), was 60-65% (normal range: 55-70%). So my cardologist said it was safe to stay the course with Camzyos and that he expected that I would feel better as it reaches more peak effect with time.

He also said I could now stop diltiazem. I did not tell him yet that I had stopped the second day 😜because it’s counter-indicated. My heart rate is still up. So, he said we should discuss a low dose of Metoprolol. It’s also counter-indicated for Camzyos. Does anyone in the group take a beta blocker while on Camzyos?

Prior to starting Camzyos, my obstruction was only mild at rest, but severe post-exercise obstruction around 230 mmHg. I had a limited echo on Friday. So I will be very interested to do a stress echo after I have been on Camzyos for a while.

REPLY
3 replies
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Debra, Volunteer Mentor | @karukgirl | Jun 27, 2023
In reply to @jaymaysea "@kelliw that is GREAT news and great information to know in case others have a similar..." + (show)
Profile picture for jaymaysea @jaymaysea

@kelliw that is GREAT news and great information to know in case others have a similar situation. What a blessing to have a cardiologist that is willing to advocate for your best interest.

Enjoy your trip!!!!!

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How are you doing @jaymaysea? Did your dizziness and crummy feeling get any better?

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kelliw | @kelliw | Jun 27, 2023
In reply to @jaymaysea "@kelliw that is GREAT news and great information to know in case others have a similar..." + (show)
Profile picture for jaymaysea @jaymaysea

@kelliw that is GREAT news and great information to know in case others have a similar situation. What a blessing to have a cardiologist that is willing to advocate for your best interest.

Enjoy your trip!!!!!

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Thank you! Yes I feel so thankful I have him as my doctor! He is the only doctor in the practice of about 9 others, who is doing the Camzyos journey!

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kelliw | @kelliw | Jun 27, 2023
In reply to @karukgirl "I am SO very happy to get your report today! What a great doctor! I bet..." + (show)
Profile picture for Debra, Volunteer Mentor @karukgirl

I am SO very happy to get your report today! What a great doctor! I bet you are feeling much relieved like a weight has been taken off your shoulders. Now you can go on your girls trip and not have this hanging over you like a dark cloud! Thank you for letting us know how it went @kelliw! Blessings abundant to you 🙂

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Thank you, Debra! I am so relieved! He is pretty amazing! Yesterday I reserved 6 spots to tube down the Yampa river on our trip! Going to take the gondola up and have lunch at the lodge, and then do this nice mile walk on one of the trails. I cannot wait, and am beyond thankful that I will be able to do this fun stuff in 2 weeks! 🙂

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jaymaysea | @jaymaysea | Jun 27, 2023

@kelliw that is GREAT news and great information to know in case others have a similar situation. What a blessing to have a cardiologist that is willing to advocate for your best interest.

Enjoy your trip!!!!!

REPLY
2 replies
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Mentor
Debra, Volunteer Mentor | @karukgirl | Jun 26, 2023
In reply to @kelliw "Hi Everyone-I had my follow-up to my echo this morning, and everything is still looking great!..." + (show)
Profile picture for kelliw @kelliw

Hi Everyone-I had my follow-up to my echo this morning, and everything is still looking great! We talked about my dr.'s phone call regarding the "protocol" that said I need to stop taking Camzyos for a month and how he said no I want to keep her on 2.5 mg. Don't do this to her! She is feeling great! They said OK! They also said a pharmacist cannot override a doctor's orders.
So I talked to the specialty pharmacist today and she sent my prescription. It will be here Wednesday. I have 6 pills left, so will be just fine! Sooo if this happens to you, your doctor can override the protocol for you. I will have another echo next month, not in 3 months, to make sure everything is still fine. Hallelujah! 🙂

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I am SO very happy to get your report today! What a great doctor! I bet you are feeling much relieved like a weight has been taken off your shoulders. Now you can go on your girls trip and not have this hanging over you like a dark cloud! Thank you for letting us know how it went @kelliw! Blessings abundant to you 🙂

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1 reply
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kelliw | @kelliw | Jun 26, 2023
In reply to @karukgirl "I'm glad you see him Monday. Did you share your experience with Mayo Connect with him?..." + (show)
Profile picture for Debra, Volunteer Mentor @karukgirl

I'm glad you see him Monday. Did you share your experience with Mayo Connect with him? He has no idea we all think he's a hero!

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I told him your message today, and thanked him for being my advocate! He said of course! He also said he told another patient about this today! I am the only one in the practice taking this as of now. I hope others can be helped too!

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