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.

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)
@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.

REPLY
1 reply
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.

REPLY
1 reply
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)
@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 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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1 reply
jaymaysea | @jaymaysea | Jun 28, 2023

Congratulations on starting. It took me months to get everything in line to start taking the drug. I don’t know if I would have moved forward without the support and insights of the wonderful, caring people in this support group.
Listen to your body and be vigilant. Reach out to your cardologist if you have symptoms. I started to feel crappy around the end of the second week. Had an echo done (trust but verify) and everything was fine. My cardologist told me I should start to feel better once the drug built up in my system. My heart rate is still up and I am still fatigued; but the lightheadedness is gone. Overall, I am feeling better now.
Praying for you!

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1 reply
Mentor
Debra, Volunteer Mentor | @karukgirl | Jun 28, 2023
In reply to @elmore71111 "I just started taking camzyos yesterday, but I am on a beta blocker, when I spoke..." + (show)
@elmore71111

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!

Jump to this post

@elmore71111, thanks for checking in. Your new journey on Camzyos is just beginning! Thank goodness for all these great members sharing their experiences with each other. Nobody knows like someone who is going through it or has gone through it. It sure seems like a roller coaster ride...up, up, up, up and then BAM! Over the cliff edge! Just having HOCM is stressful. But the added anxiety of a brand new medication with no long term studies, being at the mercy of a drug company's protocol...yes, sounds stressful to me. I hope you sail through the next few weeks with little to no side effects. @kelliw, @hansj, @jaymaysea, @nbs and @starbuck41 have all been on the road before you...each one has a bit different experience, so I hope you can lean on their shared experiences. Mayo Connect is here for you! When do you see your doctor next? Are they easy to get in contact with if you need questions answered or need help?

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

Hi jaymaysea-I am on Metroprolol-50 mg/day. It hasn't interfered with how I feel on Camzyos. I had a really bad reaction to Diltiazem, so he put me back on Metropolol. I am hoping you feel better and better each day! I am do happy the dizziness subsided!.:)

REPLY
kelliw | @kelliw | Jun 28, 2023
In reply to @jaymaysea "Thank you @nbs. I recall you had to get off Verapamil two weeks before starting Camzyos...." + (show)
@jaymaysea

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.

Jump to this post

One more thing-my BP has been up lately as well, so my dr. put me on a BP patch called Clonidine and I am on Pantoprazole, for acid reflux from an ulcer which I no longer have-which am going to be weening off. My primary care and the specialty pharmacist said to go ahead and get off of it and see how I do. I want to get off as many meds as I can! I feel like a walking pharmacy! 🙂

REPLY
1 reply
kelliw | @kelliw | Jun 28, 2023
In reply to @nbs "I am still on Metoprolol and have been on it since the beginning (six weeks). I..." + (show)
@nbs

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

Jump to this post

My dr is keeping me on it too. I think he said it is still helping my heart slow down so more blood gets through, but he said we may be able to stop it eventually.

REPLY
jaymaysea | @jaymaysea | Jun 28, 2023
In reply to @kelliw "One more thing-my BP has been up lately as well, so my dr. put me on..." + (show)
@kelliw

One more thing-my BP has been up lately as well, so my dr. put me on a BP patch called Clonidine and I am on Pantoprazole, for acid reflux from an ulcer which I no longer have-which am going to be weening off. My primary care and the specialty pharmacist said to go ahead and get off of it and see how I do. I want to get off as many meds as I can! I feel like a walking pharmacy! 🙂

Jump to this post

I have GERD and was switch to Pantoprazole from Esomeprazole. I am trying to minimize acid triggering food (Acid Watchers Diet), I also take Pravastatin and Mounjaro. So, I feel like a walking pharmacy too. 😜

REPLY
HansJ | @hansj | Jun 29, 2023
In reply to @kelliw "Hi Hans-Thank you so much for your response. Yep I feel the same way. I have..." + (show)
@kelliw

Hi Hans-Thank you so much for your response. Yep I feel the same way. I have had some chest tightness and feeling like someone is squeezing my heart at times. Please let me know what your doctor says. I go to mine on Monday and I will let you know what he says as well. Take care! 🙂

Jump to this post

Well, here we go... I'm stuck at the lower 2.5mg dose for now. Doctor said the echo showed I was still getting benefit despite not feeling as amazing as I did on 5mg. The starting dose had brought me right back to "normal" (no wonder I felt so great), protocol requires that they lower it (arg!). I've been on the lower dose for 4 weeks now and while I'm doing okay I've started logging my returning HCM issues (light headed, out of breath) as they occur. I've had to curtail the long walks I was taking Charlie on. The doctor will meet with me in 3 weeks to discuss further, he said he's not opposed to going back to 5mg but is being super caution as he is concerned about me having too much and relaxing my heart too much. So I've gone from feeling terrible for the past 2 years, to feeling amazing for a couple months, and now feeling just okay. I'm going to hang in their for a while but now that I've had a taste of normal life again I'm not willing to put up with a sedentary life style long term, at some point I'll give up and just opt for the surgery and a permanent fix.

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