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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HansJ | @hansj | May 29, 2023
In reply to @kelliw "Hi Hans-thank you so much for your response! I am really bummed because I don't want..." + (show)
@kelliw

Hi Hans-thank you so much for your response! I am really bummed because I don't want to start feeling horrible again either. I know-we both feel great with things the way they are! It's only been 62 days-but maybe it's better for us to be on the lowest dosage, as long as we keep feeling great. If not, my doctor said I can go back up. He said he had to lower the dose because my gradient numbers are so good now. Anything under 20 needs to be dropped down to 2.5. Please keep in touch and let me know how you are feeling when you switch. I will do the same. I should get the new prescription on Wednesday, I think.

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Doc just connected with me and it turns out it's all good news. My echo showed that I've had an excellent response to the medication (which I already knew), to the point that the abnormal gradients of pressure in my heart are now virtually non-existent (wow!). He said this necessitates a dose reduction to ensure they don't over-do it, and there may be further adjustments after each future echo.

So I guess this is just how they determine the optimal dose for me. I'm going to stop worrying now and and go back to basking in my new found health.

REPLY
2 replies
kelliw | @kelliw | May 29, 2023
In reply to @hansj "Doc just connected with me and it turns out it's all good news. My echo showed..." + (show)
@hansj

Doc just connected with me and it turns out it's all good news. My echo showed that I've had an excellent response to the medication (which I already knew), to the point that the abnormal gradients of pressure in my heart are now virtually non-existent (wow!). He said this necessitates a dose reduction to ensure they don't over-do it, and there may be further adjustments after each future echo.

So I guess this is just how they determine the optimal dose for me. I'm going to stop worrying now and and go back to basking in my new found health.

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Yay! That is great news! That is basically what my doctor said too! Thank you for clarifying for me. I'm so glad they both said the same thing and that we are both having such great responses to this medication! About to go out on our friends' boat! Enjoy the rest of your day. Thank you again!

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avcowie | @avcowie | May 29, 2023

I’m curious about where Camzyos will be made available internationally for patients.
Also, does
anyone have tinnitus? (My symptoms have been strong for about a year.) I’m on day 5 of 5mg Camzyos and was previously taking Rythmodan. Did your tinnitus improve?

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jaymaysea | @jaymaysea | May 30, 2023
In reply to @nbs "I read this article in January before I had been approved to take Camzyos and before..." + (show)
@nbs

I read this article in January before I had been approved to take Camzyos and before I changed to a doctor from Washington U's cardiology department. This is very helpful for understanding this drug (especially the first three paragraphs).
https://www.barnesjewish.org/Curiosus-Mag/Article/ArtMID/6756/ArticleID/2281/NEW-DRUG-POSITIVE-RESULTS-FOR-HYPERTROPHIC-CARDIOMYOPATHY

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Excellent article. I learned a lot. Thank you so much for posting.

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Mentor
Debra, Volunteer Mentor | @karukgirl | May 30, 2023

I agree with @jaymaysea, I read the article too @nbs, and found it very informative. The long term effects are not known yet since it's so new, but it seems it is very helpful for most HOCM, but not all, folks trying it. Thanks for sharing the article.

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starbuck41 | @starbuck41 | May 31, 2023

Okay so it’s been a few days since I posted.. so here’s a recap.
It’s day 20
Weight 266.7
5mg has been abnormally consistent at about 0807am every day, within minutes or seconds of previous days.
I’m on no specific diet but I’m prone to eat high protein in the from of Steak and always coffee in the am.
So labs..
Cholesterol was borderline high
Glucose was 112… pre diabetes
Everything else was in normal range
Blood pressure 102/86.. I have not taken beta blockers or bp meds since starting Camzyos. Still no outward side effects.. sleeping solid.. cardiologist appointment is tomorrow..will report back what he says..
Tonight’s menu
Ribeye, baked potatoe, ice tea, and some kinda green vegetable.. me and Murphy are gonna have steak n eggs for lunch..
Until tomorrow y’all have a wonderful day and stay safe
Dave
REPLY
2 replies
Mentor
Debra, Volunteer Mentor | @karukgirl | May 31, 2023
In reply to @starbuck41 "Okay so it’s been a few days since I posted.. so here’s a recap. It’s day..." + (show)
@starbuck41

Okay so it’s been a few days since I posted.. so here’s a recap.
It’s day 20
Weight 266.7
5mg has been abnormally consistent at about 0807am every day, within minutes or seconds of previous days.
I’m on no specific diet but I’m prone to eat high protein in the from of Steak and always coffee in the am.
So labs..
Cholesterol was borderline high
Glucose was 112… pre diabetes
Everything else was in normal range
Blood pressure 102/86.. I have not taken beta blockers or bp meds since starting Camzyos. Still no outward side effects.. sleeping solid.. cardiologist appointment is tomorrow..will report back what he says..
Tonight’s menu
Ribeye, baked potatoe, ice tea, and some kinda green vegetable.. me and Murphy are gonna have steak n eggs for lunch..
Until tomorrow y’all have a wonderful day and stay safe
Dave

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Great to hear from you @starbuck41/Dave! I bet you are anxious to hear what the cardiologist has to say at your appointment tomorrow. Murphy is very handsome, and he eats a lot of steak and eggs, how is his cholesterol?

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kelliw | @kelliw | May 31, 2023
In reply to @nbs "I read this article in January before I had been approved to take Camzyos and before..." + (show)
@nbs

I read this article in January before I had been approved to take Camzyos and before I changed to a doctor from Washington U's cardiology department. This is very helpful for understanding this drug (especially the first three paragraphs).
https://www.barnesjewish.org/Curiosus-Mag/Article/ArtMID/6756/ArticleID/2281/NEW-DRUG-POSITIVE-RESULTS-FOR-HYPERTROPHIC-CARDIOMYOPATHY

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Thank you for this article! It was very informative. I shared it with my family and they appreciated getting more information too.

REPLY
kelliw | @kelliw | Jun 1, 2023

Good morning! I am still feeling great but had a very frustrating day yesterday. As you know, my dr. had to do a new prescription for 2.5 instead of 5mg, that I have been taking. He called it in Friday. I am now down to 1 pill and yesterday the insurance company said they won't approve the new dose until he does another prior authorization! He said she has already been approved for Camzyos! They said with each new dose change he has to do another PA, which is a TOTAL pain for him. So he was on hold for over 30 minutes-and has patients to see-never got through. I said I will try chat. I was on chat for AN HOUR, while I am trying to get ready for Open House last night, and take care of 18 2nd graders! I went away to help a child for 2 minutes, after I had been sitting there waiting for another response for 10 minutes and she disconnected the chat saying I didn't respond! Then I got on chat for another hour and only came away with nope you will not get your meds until the PA has been approved which could be 3-8 days!!! I was beyond frustrated, as was my doctor. BMS reps and the training process for my doctor have not made this an easy process. Anyway...I got a call from my doctor's assistant yesterday afternoon that Cigna did a rush approval and so I will hopefully get my new prescription tomorrow. I have one pill left for tomorrow. Now I just have to hope this lower dose still works. If not, we will have to go through this process all over again! GRRRRRR

REPLY
4 replies
nbs | @nbs | Jun 1, 2023
In reply to @kelliw "Good morning! I am still feeling great but had a very frustrating day yesterday. As you..." + (show)
@kelliw

Good morning! I am still feeling great but had a very frustrating day yesterday. As you know, my dr. had to do a new prescription for 2.5 instead of 5mg, that I have been taking. He called it in Friday. I am now down to 1 pill and yesterday the insurance company said they won't approve the new dose until he does another prior authorization! He said she has already been approved for Camzyos! They said with each new dose change he has to do another PA, which is a TOTAL pain for him. So he was on hold for over 30 minutes-and has patients to see-never got through. I said I will try chat. I was on chat for AN HOUR, while I am trying to get ready for Open House last night, and take care of 18 2nd graders! I went away to help a child for 2 minutes, after I had been sitting there waiting for another response for 10 minutes and she disconnected the chat saying I didn't respond! Then I got on chat for another hour and only came away with nope you will not get your meds until the PA has been approved which could be 3-8 days!!! I was beyond frustrated, as was my doctor. BMS reps and the training process for my doctor have not made this an easy process. Anyway...I got a call from my doctor's assistant yesterday afternoon that Cigna did a rush approval and so I will hopefully get my new prescription tomorrow. I have one pill left for tomorrow. Now I just have to hope this lower dose still works. If not, we will have to go through this process all over again! GRRRRRR

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I have been worried for you. Did everything work out ok?

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