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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elmore71111 | @elmore71111 | Jun 30, 2023
In reply to @jaymaysea "Good Morning @elmore71111, I was lightheaded (but I did not feel faint), more fatigued than usual,..." + (show)
@jaymaysea

Good Morning @elmore71111, I was lightheaded (but I did not feel faint), more fatigued than usual, and experienced more shortness of breath upon exertion. The combination made me feel generally crappy. The lightheadedness was intermittent. It lasted about a week, starting on a Saturday evening. My cardiologist sent me for an echo on the following Friday; so, about a week after the start of my symptoms. To be on the safe side I didn’t drive during that week. Now, I feel better; but, I am still fatigued. No lightheadedness and the shortness of breath is better. I have two flights of stairs in my house - 26 stairs in total. Navigating the stairs brings on the shortness of breath.

Everyone is different. So you may not have any symptoms. Mindset is so important to your health. So stay positive, enjoy life, because tomorrow is not promised.

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Thank you so much for your encouragement!! You are so right about a positive mindset, I have learned through this journey that getting older is not a ‘right’, kind of like I used to view it… it is a luxury not afforded to many and I always keep that in mind and try to relish every moment because as you said tomorrow is not promised.

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jaymaysea | @jaymaysea | Jun 30, 2023

Good Morning @elmore71111, I was lightheaded (but I did not feel faint), more fatigued than usual, and experienced more shortness of breath upon exertion. The combination made me feel generally crappy. The lightheadedness was intermittent. It lasted about a week, starting on a Saturday evening. My cardiologist sent me for an echo on the following Friday; so, about a week after the start of my symptoms. To be on the safe side I didn’t drive during that week. Now, I feel better; but, I am still fatigued. No lightheadedness and the shortness of breath is better. I have two flights of stairs in my house - 26 stairs in total. Navigating the stairs brings on the shortness of breath.

Everyone is different. So you may not have any symptoms. Mindset is so important to your health. So stay positive, enjoy life, because tomorrow is not promised.

REPLY
1 reply
elmore71111 | @elmore71111 | Jun 30, 2023
In reply to @jaymaysea "Congratulations on starting. It took me months to get everything in line to start taking the..." + (show)
@jaymaysea

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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Thank you so much for the encouragement! When you started feeling bad at the end of the 2nd week, how long did it take for those symptoms to subside? I am currently on day 4 and my husband planned a two week vacation with me at the end of next week, which would put me near the end of my second week. We’re staying fairly close because I’m too nervous to be too far away from my drs, but I’m wondering if I should just tell him ‘let’s have a staycation’ lol. And what kind of symptoms did you have while you were feeling bad?

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nanakpm | @nanakpm | Jun 29, 2023

Has anyone been given a higher dose of Camzyos after two months or longer? I just had my second echocardiogram after 7 weeks on 5mg Camzyos. Although my symptoms are better - almost no angina, more energy - the LVOT gradient is still high. My doctor said she was disappointed and asked if I would consider surgery. I said no, I want to give this drug more time, and consider a higher dose. Can anyone share a similar experience? Thanks for any experience you can share.

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kelliw | @kelliw | Jun 29, 2023
In reply to @hansj "Well, here we go... I'm stuck at the lower 2.5mg dose for now. Doctor said the..." + (show)
@hansj

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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Hi Hans-I was not feeling as well either, on the 2.5 vs. the 5 and have now turned a corner. I am feeling really good. I have now been on the 2.5 for 4 weeks as well. My dr said the same thing about the worry about my heart being relaxed and weakened. It is good to know they. can override the protocol if they feel it is necessary and safe. I agree, now that I have experienced feeling well again and being able to resume all of the activities I want to do, I am not going to put up with being taken off of this! 🙂

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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! 🙂

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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.

REPLY
2 replies
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! 🙂

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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. 😜

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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.

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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.

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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.

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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! 🙂

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1 reply
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.

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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!.:)

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