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Anyone take new drug Camzyos (mavacamten) for HCM?
Hypertrophic Cardiomyopathy (HCM) | Last Active: 1 day ago | Replies (808)Comment receiving replies
My adult daughter started Camzyos 8 months ago. Her gradient was 100 and now it’s 0. However, it has exhausted her, she never has enough to drink, her potassium level is at 1.9. She is always needing diuretics. She is in excruciating pain from the lack of potassium. It has relaxed her heart so much that she has no quality of life and is starting imaging next week for a septal myectomy. There is too much water to drink, so many supplements, her eyes are hollow (she was beautiful). This may not happen to everyone, but that’s been our experience with a top cardiologist in one of the largest cities in America.
Replies to "My adult daughter started Camzyos 8 months ago. Her gradient was 100 and now it’s 0...."
I will. Thanks for your wonderful support!
Your daughter and you will be in my prayers. My heart aches for you both. I see you are a spiritual person. So, try to maintain your faith. I know that is easier said than done right now.
Has your daughter stopped taking Camzyos? I don’t know what her condition was prior to taking the drug; but, I hope it did not make her worse.
Try to get her the very best medical treatment possible. I too live in a major metropolitan city. But, if I do have to have surgery I intend to go to a Center of Excellence, a place where they do hundreds of the type of surgery that is needed not a dozen a year.
I have not been part of this support group very long. But it has given me a lot of comfort. I am still afraid of Camzyos. But, I decided I will try it first before pursuing surgery. I encourage you to use the group to ask questions. It helps.
Thank you for your kindness. She is still on the drug. It has reduced her gradient to 0 at times, yet the gradient keeps going up and down. It’s all over the place. She has echos monthly. She got diagnosed 5 years ago after a pregnancy and something happened after year 4 where the gradient was at 100. Today, it is at 80. Last month it was at 4. In other words, it hasn’t held at 0. Yet, her left ventricular has remained think and so even when the LVOT was at 0, she still felt no relief. Her entire body aches, but she just came out of the hospital today. Her potassium was at 1.9. We don’t know if ivs of potassium will reduce the pain. For my daughter, who has been on camzyous for 8 months, there has not been an improvement. Her cardiologist has a patient who is currently doing better. It may be a journey each person has to decide to take. There is a small feeling that we wasted time and her condition has worsened and maybe the septal myectomy should have been done months ago. We will never know and of course, I do not know about her results with the surgery. She is being measured next week to see if she qualifies. Her thickness may be too deep to qualify for surgery, then that is a whole other terrifying topic.
I hope your journey goes well. Thank you.
Hello @dbrima and welcome to Mayo Clinic Connect. I am so sorry to hear of your daughter's reaction.
I wanted to bring you into an existing discussion on Camzyos, so you will notice I have moved your post here:
- Anyone take new drug Camzyos (mavacamten) for HCM?: https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
Several members have joined you. What is your cardiologist saying about how your daughter is reacting?
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Oh my goodness @dbrima, my heart goes out to you. Thank you for sharing your story here on Connect. I suppose there is always a downside to trying new drugs...and this sounds like it started out with good results but now the bad outweighs the good. There certainly are no long term studies on a drug so new, and it sounds like your precious daughter is not a candidate any longer. I'm relieved to hear your daughter has a doctor experienced in HOCM. There truly aren't many, so that is a blessing.
I had a septal and papillary myectomy a little over two years ago at the Mayo in Rochester. Naturally, anyone would have fear of undergoing a major, major surgery. I can tell you that the care I received at Mayo was world class and the doctors, nurses, lab techs, dietary aids, housekeeping, etc are the reason I did so well. You mention you live in a major city, do you know if the hospital you are going to is a Center of Excellence (COE)? That is super important as the septal myectomy should only be performed by the top surgeons at a COE. There are only a few places in America that are considered COE for HOCM surgery, naturally, Mayo is one.
I am so sad for you, I can tell this is terribly hard on you too. Watching your child suffer so much. You came to the right place for information. Please feel free to reach out anytime with any questions. When do you believe they plan to schedule surgery? Do you know if they need to let her heart get stronger before going through it? What does your daughter think about all this?