Side Effects of Mavacamten (Camzyos)

That is so terrible @deanna529! I can't imagine. Have things gotten better for you?

Almost 1 year ...about 75% better. Thank you for asking. I just think it triggered something in my body. . I am now doing a double-blind clinical trial for Aficamten/ Metoprolol. So far so good. No serious side effects.

Are you saying your taste is 75% better?🫤
I have serious taste issues, been on Camzyos since 10-5-23. Some food is absolutely horrid! Chocolate, sweets, Meat. Made the holidays not too fun.

Yes, my taste has improved... but it has been almost 1 year. ;-( I thought I was going to be like this for life. LOL
Still have a dry mouth feeling sometimes and my tongue still is not right. But I do understand that chocolate and anything sweet tastes terrible. I couldn't even enjoy a steak. Or a piece of fruit. Everyone at NYU thought I was crazy. They said they never heard of this! Well, I guess I am the first and you are the second. Please report this to Bristle Meyers Squib and to the special pharmacy you get it from. It has to be documented. I just couldn't take it after 6 months. It really triggered something strange in me. I guess it is not common. I wish you well. Anything I can help you with, don't hesitate.

What strength did you start on and what strength did you work up to? I have not had any of that but I am only on 5mg or the last 3 months but I expect they will be increasing my dose probably in month 5. Thanks for the information. Hope you get back to normal taste soon.

I developed a metallic taste almost immediately on 2.5 mg. I believe I only went up to 5 mg. and my last echo on Mava was very good. I just could not take the bad taste in my mouth etc. Dry mouth, burning lips, sore tongue... It was a nightmare. I stopped after 6 months. I thought that was a good try. Good luck to you. If you can tolerate it with no side effects, that's great!

I’ve been on 5 mg of Mavacampten since 11-22-23. In 4 weeks my valve returned to normal! I’m 77 and this was just discovered when I had a heart attack.
This thread is helpful in that I have had changes in taste.
I’ve been returning food to the market as being spoiled when, as I read here, it is a change due to Mevacamptan, Fish, coffee, veal…..so far.
I will report this to Squibb and the supplier of the drug as suggested by deanna529

Hello there @bigbdmama, and a warm welcome to Mayo Connect. I'm so happy to hear that you have discovered the benefits of this wonderful online community. I'm especially happy that @deanna529 was able to give you a good suggestion to report these strange and yucky side effects to BMS.
It must have been surprising to find out you have HOCM, and after a heart attack to boot!
Four weeks is a relatively short time, when did you first notice your "taster" was off?

Hi Debra…..to answer your question about taste. I first noticed it about 4 weeks after starting Mevacamptan. I was eating cod with two others and I threw out my portion while the other two enjoyed theirs. I prepare all of our food at home so there’s no chance of prep being odd. I also noticed coffee change at about the same time. I didn’t put these things together until I came upon this thread. Then the breaded chicken cutlets failed but others thought they were yummy. I prepare them with lemon. I tasted the lemon but the chicken was less than palatable

It @bigbdmama again…..the kicker with this is I almost made us buy a new oven! But I went out and bout an oven thermometer and the oven temp reads correctly.Tonight is a homemade roasted chicken. I’ll let you know later on. Fingers crossed