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.

nanakpm | @nanakpm | Dec 15, 2023
In reply to @andyherman3 "Thank you so much for your comments. Where did you order the CYP test from as..." + (show)
@andyherman3

Thank you so much for your comments. Where did you order the CYP test from as the results would be very interesting? My gradient dropped from over 100 to 19 after one month on 5mg of mavacamten. I was decreased to 2.5mg and have sustained my low gradient at 17 after month 2. I have had “known” HCM for over 10 years and had been relatively asymptomatic on metoprolol (with a gradient of 30). However, this year (a few months after I acquired Covid) my gradient and symptoms (SOB and fatigue which is new) increased significantly. Now I wonder if I have long covid instead since my gradient is so low and I’m still symptomatic?? I will stay the course for a few more months and hope more improvement is to come. I agree, we have to be our own advocate and so much more research is needed for HCM.

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I ordered the test from Pillcheck. I live in Canada, so if you are in the US, you may have other options. I looked for a company that uses an accredited laboratory. I sent in my sample 18 days ago, and have not received results yet but it looks like it's at the review stage by a pharmacist.

I saw my family doc today and she was so reassuring. She said don't focus on your heart condition. Worrying about it is making you tired! Several doctor friends have told me the same thing (other than my cardiologist, who makes me crazy!).

Hope you just have post-covid symptoms which will improve soon.

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nanamc1957 | @nanamc1957 | Dec 16, 2023
In reply to @williampconley "I've been on Camzyos for 30 days. I have HoCM , septum = 16-17mm. No miraculous..." + (show)
@williampconley

I've been on Camzyos for 30 days.
I have HoCM , septum = 16-17mm.
No miraculous symptoms reduction to report, but my symptoms are on the mild side.
Chest discomfort and light headedness when going up hills or stairs.
General chest discomfort, sometimes while doing nothing.
But ...had my first (post med) echo last Friday and my Gradient went from 35/50mmHg (rest, Valsalva) to 13/17 !!
Based on the algo, I just went from 5mg to 2.5mg.
Next echo 11/22 ...

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I I have been takingcamzyos for almost 3 months now and the obstruction has completely gone

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nanamc1957 | @nanamc1957 | Dec 16, 2023
In reply to @karukgirl "Welcome @williampconley! I am so glad you are here and shared your Camzyos story with the..." + (show)
@karukgirl

Welcome @williampconley! I am so glad you are here and shared your Camzyos story with the group. You must feel pretty happy about those results from your echo. There a so many great members on here who share your same story, and they have been so helpful to one another in the ups and downs of Camzyos. I hope you do well on the lowered dose, and thankfully you have another echo coming up in three weeks. When were you diagnosed with HOCM?

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I still take 5mg but my obstruction has completely gone away

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andyherman3 | @andyherman3 | Dec 16, 2023
In reply to @williampconley "Thanks for your reply ! I was diagnosed in July (by echo)...pretty quickly after reporting minor..." + (show)
@williampconley

Thanks for your reply !
I was diagnosed in July (by echo)...pretty quickly after reporting minor symptoms to my primary care Dr.
Met with the Lahey team in Sept ... GREAT team !!
Now here I am Nov 1 ! As far as diagnosis and getting a plan together, not bad. Of course, surgery was suggested as the other option, but I chose to give Camzyos a chance first !

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I went Lahey as well and was very pleased. Did you see Dr. Rowin or Maron? My results were similar to yours and my dose was lowered to 2.5mg. Did your symptoms improve with the decreasing numbers? Hoping mine will improve more over time. 🤞

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1 reply
andyherman3 | @andyherman3 | Dec 16, 2023
In reply to @karukgirl "Hello @lakehappy, and a warm welcome to Mayo Connect! I was a stalker on here too..." + (show)
@karukgirl

Hello @lakehappy, and a warm welcome to Mayo Connect! I was a stalker on here too when I first joined, so I am happy you feel comfortable enough to jump in! You have come to the right place to find information about Camzyos. There are some incredible members here that have shared their journey with all of us, and I hope as you begin Camzyos this coming Tuesday, you will feel free to ask them your questions. @kelliw and @jaymaysea are Camzyos champions and have shared their ups and downs honestly and openly with the group.
There is a strong genetic link, have you read this? It's very informative...
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
HOCM/HCM is so difficult to diagnose because the symptoms mimic so many other heart conditions. Starting on Camzyos I would expect you to be apprehensive, it's an experimental drug, but there has been a lot of success, and also some failures. I think you are very brave to try it! I had open heart surgery at Mayo Rochester, so I didn't get an opportunity to try Camzyos, but I can tell you the Camzyos group is a wealth of information. Have you had a chance to read some of the stories here in the Camzyos group?

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Did the heart surgery improve/ remove your symptoms? How long ago was it and are the results long lasting? I was told this is the next step if Camzyos doesn’t work. Would love your feedback on this and if you felt the risk was worth the benefit? Thanks so much.

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1 reply
Mentor
Debra, Volunteer Mentor | @karukgirl | Dec 16, 2023
In reply to @andyherman3 "Did the heart surgery improve/ remove your symptoms? How long ago was it and are the..." + (show)
@andyherman3

Did the heart surgery improve/ remove your symptoms? How long ago was it and are the results long lasting? I was told this is the next step if Camzyos doesn’t work. Would love your feedback on this and if you felt the risk was worth the benefit? Thanks so much.

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Hi @andyherman3, thanks for asking.
100% yes the surgery worked for me. I take only a low dose aspirin each day and that is it. I was barely able to walk on flat ground, let alone a gentle incline or steep hill. I felt like I had lost any joy left in my life. I was so active physically, and now I couldn't bend over to tie my shoes without gasping for air and having tachycardia. My heart was starting to fail, and I was not able to join the Camzyos trial. I was offered disopyramide as a last ditch effort, after at least 4 beta blockers and calcium channel blockers did not work. I ended up at Mayo Clinic in Rochester, and had the prescription at home ready to try, but I wanted another opinion. Mayo said open heart surgery. Naturally, I was freaked out! It's a BIG surgery. And has risks! But every procedure has risks as do drugs...so knowing I was in the best hospital in the whole word, I put my faith in God and the Mayo. Looking back, it's been three years now, I just can't imagine not having had this done. I'm so much better. I'm able to hike again. Not like I used to, but I'm also three years older! I had the surgery when I was 62. I had middle back pain that was a bear to live with for a year, and other then that, I have a pretty scar to remind me how brave I was and how I overcame my tremendous fear to proceed with the surgery. You're the only one who can decide this...you know that, but I can say being in great shape before surgery was very helpful. I think if I had kept postponing it, and sitting on the fence, I would have further declined and my health would not have been so good. Make sense?

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2 replies
andyherman3 | @andyherman3 | Dec 16, 2023
In reply to @karukgirl "Hi @andyherman3, thanks for asking. 100% yes the surgery worked for me. I take only a..." + (show)
@karukgirl

Hi @andyherman3, thanks for asking.
100% yes the surgery worked for me. I take only a low dose aspirin each day and that is it. I was barely able to walk on flat ground, let alone a gentle incline or steep hill. I felt like I had lost any joy left in my life. I was so active physically, and now I couldn't bend over to tie my shoes without gasping for air and having tachycardia. My heart was starting to fail, and I was not able to join the Camzyos trial. I was offered disopyramide as a last ditch effort, after at least 4 beta blockers and calcium channel blockers did not work. I ended up at Mayo Clinic in Rochester, and had the prescription at home ready to try, but I wanted another opinion. Mayo said open heart surgery. Naturally, I was freaked out! It's a BIG surgery. And has risks! But every procedure has risks as do drugs...so knowing I was in the best hospital in the whole word, I put my faith in God and the Mayo. Looking back, it's been three years now, I just can't imagine not having had this done. I'm so much better. I'm able to hike again. Not like I used to, but I'm also three years older! I had the surgery when I was 62. I had middle back pain that was a bear to live with for a year, and other then that, I have a pretty scar to remind me how brave I was and how I overcame my tremendous fear to proceed with the surgery. You're the only one who can decide this...you know that, but I can say being in great shape before surgery was very helpful. I think if I had kept postponing it, and sitting on the fence, I would have further declined and my health would not have been so good. Make sense?

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Perfect sense! Thank you so much for sharing your story. I just turned 65 and was very active before progression of my HCM. If Camzyos doesn’t give me significant relief, surgery would be my next step (if I’m brave enough like you). ❤️ hopefully your results will last a lifetime.

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annnd | @annnd | Dec 24, 2023
In reply to @karukgirl "Hi @andyherman3, thanks for asking. 100% yes the surgery worked for me. I take only a..." + (show)
@karukgirl

Hi @andyherman3, thanks for asking.
100% yes the surgery worked for me. I take only a low dose aspirin each day and that is it. I was barely able to walk on flat ground, let alone a gentle incline or steep hill. I felt like I had lost any joy left in my life. I was so active physically, and now I couldn't bend over to tie my shoes without gasping for air and having tachycardia. My heart was starting to fail, and I was not able to join the Camzyos trial. I was offered disopyramide as a last ditch effort, after at least 4 beta blockers and calcium channel blockers did not work. I ended up at Mayo Clinic in Rochester, and had the prescription at home ready to try, but I wanted another opinion. Mayo said open heart surgery. Naturally, I was freaked out! It's a BIG surgery. And has risks! But every procedure has risks as do drugs...so knowing I was in the best hospital in the whole word, I put my faith in God and the Mayo. Looking back, it's been three years now, I just can't imagine not having had this done. I'm so much better. I'm able to hike again. Not like I used to, but I'm also three years older! I had the surgery when I was 62. I had middle back pain that was a bear to live with for a year, and other then that, I have a pretty scar to remind me how brave I was and how I overcame my tremendous fear to proceed with the surgery. You're the only one who can decide this...you know that, but I can say being in great shape before surgery was very helpful. I think if I had kept postponing it, and sitting on the fence, I would have further declined and my health would not have been so good. Make sense?

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Thank you for sharing this. I was recommended to have surgery 6 months ago and out of fear have not. I have been declining. This is a happy ending story that gives me courage some are glad to have done the surgery. I am hoping to be brave enough to do it.

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1 reply
jaymaysea | @jaymaysea | Dec 25, 2023

You have every right to be fearful. Any surgery has the potential for a negative outcome. But, so does everything else in life. “FEAR stands for face everything and recover.”

Only you can decide what is best for you. On this Christmas morning, what does your faith tell you to do? My Christmas wish for you is the faith to follow your heart in whatever direction that takes you,

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Mentor
Debra, Volunteer Mentor | @karukgirl | Dec 25, 2023
In reply to @annnd "Thank you for sharing this. I was recommended to have surgery 6 months ago and out..." + (show)
@annnd

Thank you for sharing this. I was recommended to have surgery 6 months ago and out of fear have not. I have been declining. This is a happy ending story that gives me courage some are glad to have done the surgery. I am hoping to be brave enough to do it.

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Hello @annd, and Merry Christmas too!
Welcome to Mayo Connect, I am so very glad you are here. Like @jaymaysea says, and I echo...fear is something that would be normal for anyone who hears they need to have open heart surgery. Everything we do has the potential to have a negative outcome...driving a car, walking down stairs, going to a crowded concert...but we get to decide what we will do and assume the consequences.
I admire your perspective. How you are willing to to consider open heart surgery. It is scary. I admit that. And I would have done anything to avoid it. I was too late for the Camzyos trial, the usual meds were not working for me, and I could have just said this is okay for me. To live a half of a life. I had lost so much I cared about and could no longer do.
But when I look back I realize I had God by my side and that gave me great peace. It didn't hurt that I was in the BEST hospital in the WORLD either! This is a surgery like none other and you need to be in the excellent, capable hands of superior surgeons.
When I think about where I was before surgery, I wonder how much worse I would be today had I not chosen to take a chance. It felt like a chance, but in reality, it is a straight forward procedure, nailed down to the minute deals and perfected beyond belief at Mayo.
I will be so glad to help you with any questions or thoughts you care to share. Mayo Connect is a wonderful forum to share with others just like you and me. I wish you a Merry Christmas, and before I press "reply" do you have a good cardiologist on your team? One who is up with HOCM?

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