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Anyone take new drug Camzyos (mavacamten) for HCM?
Hypertrophic Cardiomyopathy (HCM) | Last Active: Nov 13 8:16pm | Replies (899)Comment receiving replies
Hello everyone. I'm a 69 year old male. I've been on Camzyos 5g for 4 months but I have some related issues.
First the good news. My gradient has improved from 165 to 27. Now, the more problematic part. I believe the improvement has significantly increased the blood flow through my heart which ( in my opinion ) has led to issues with high blood pressure, including an ER visit. I've never had a problem with hypertension, prior to starting Camzyos. The elevated BP readings started within 30 days following the start of my Camzyos regimen. I think I'm on the road to getting my BP stabilized. But I also have developed a significant increase in tinnitus in both ears, and a pounding in my stomach, both of which, are quite unsettling.
Anyone else had similar experiences, or suggestions otherwise? Thank you.
Replies to "Hello everyone. I'm a 69 year old male. I've been on Camzyos 5g for 4 months..."
@janeal99 welcome to Mayo Clinic Connect. I'm glad you found this online support group, and sure enough, @boatsforlife has responded to you with his usual stellar advice. He's been on the Camzyos road for awhile and had a few speed bumps on that road...but he has given out sage advice based on experience and wisdom.
I echo his sentiments and would for sure bring these new symptoms up to your cardiologist and or your pharmacist...this drug can be a wonder drug for many, and for some they can't tolerate the side effects.
We are all different and respond differently to the same medication. I did not take Camzyos, I went straight to a septal myectomy, with zero regrets.
It's good you are paying attention to these symptoms, and you owe it to yourself to be your own best buddy and learn as much as you can and be your own advocate.
When is your next echo? If it's out there pretty far, I'd reach out to your doctor or pharmacist for reassurance.
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@janeal99 - Hi! Welcome to the Camzyos family. I'm 61 male, on Camzyos for just over 2 years. After several months (I can't remember exactly how long), we discovered that my BP was a bit higher than normal. Nothing really bad but enough that my cardiologist put me on Losartan. Just had an echo done this morning and I was 111/73, and that's pretty typical for me now. With the incredible quality-of-life improvement I got from Camzyos, that extra med was a small price to pay (for me). Fortunately I have not had any other issues such as the tinnitus or the pounding you described, so I can't offer any useful advice. Those must be quite frustrating for you. Second thought - Do you have any gastro issues? I have been on Omeprazole for stomach acid for number of years. While Omeprazole was a possible red flag for Camzyos, I was given the go-ahead by the cardiologist, the pharmacists and the REMS program nurse case manager. I wonder if, perhaps, your stomach pounding would be related to an acid-aggravated gut somehow. But I am a simple civilian with NO medical training or expertise, so DO NOT listen to my speculations - talk to your doctor/cardiologist. Good luck, I hope you can get these side effects worked out and can experience only the good.