Amikayace: how well did you tolerate it?

Posted by carioka @carioka, Mar 27, 2022

Will soon be starting this treatment. Can you share any information on how it's tolerated?

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Hello, I see you found your way to the MAC & Bronchiectasis group. There have been a lot of discussions about Amikayce & how it is tolerated over the past few years. Here is a good one https://connect.mayoclinic.org/discussion/mac-question-1/ If you want to see the most recent posts, find the little down arrow below the intro, click and select "Newest to Oldest"
You can also use the search box at the top of the screen to search for Amikayce. I'm sorry I can't answer your questions myself – I never used that particular med.
Sue

REPLY

I started arikayce about 4 months ago. I was worried when I started because I had read about all the side effects. I’ve found the side effects to be very minimal. I had some hoarseness at first and still do occasionally but I barely notice it now. I coughed a little more at first but that subsided. I have asthma and it really hasn’t bothered me in that regard. I did notice after about 7 to 8 weeks a significant improvement in my breathing. I had been on the big three previously for 2 years and am back on them daily now. The addition of the arikayce definitely made a big difference. I’ve only had one culture since starting the arikayce and the smear came back negative but the culture still grew out mac but I have another sputum culture coming up and I’m hoping for a negative. I definitely feel much better than I ever did just being on the oral antibiotics. Also the process of doing the neb and cleaning it does take about 25 minutes a day but it’s really no big deal I work full time have kids and still manage to get it done easily.

REPLY

Last year I took 46 amikacin infusions three times a week monday-wednesday-friday, from May to September. I tolerated it very well in terms of liver and kidney, I didn't feel any side effects, except a small detectable hearing loss. The treatment was very effective, I got a significant improvement in MAI. If you would like more information, please contact me, it will be a pleasure to be of assistance.

REPLY
@marlin

I started arikayce about 4 months ago. I was worried when I started because I had read about all the side effects. I’ve found the side effects to be very minimal. I had some hoarseness at first and still do occasionally but I barely notice it now. I coughed a little more at first but that subsided. I have asthma and it really hasn’t bothered me in that regard. I did notice after about 7 to 8 weeks a significant improvement in my breathing. I had been on the big three previously for 2 years and am back on them daily now. The addition of the arikayce definitely made a big difference. I’ve only had one culture since starting the arikayce and the smear came back negative but the culture still grew out mac but I have another sputum culture coming up and I’m hoping for a negative. I definitely feel much better than I ever did just being on the oral antibiotics. Also the process of doing the neb and cleaning it does take about 25 minutes a day but it’s really no big deal I work full time have kids and still manage to get it done easily.

Jump to this post

Thank you so much for your reply. It gives me courage going forward!

REPLY
@saaa

Last year I took 46 amikacin infusions three times a week monday-wednesday-friday, from May to September. I tolerated it very well in terms of liver and kidney, I didn't feel any side effects, except a small detectable hearing loss. The treatment was very effective, I got a significant improvement in MAI. If you would like more information, please contact me, it will be a pleasure to be of assistance.

Jump to this post

That’s good news.. my gf had hearing loss, renal failure, kidney CKD failure… so happy your doing good.. we are still fighting her MAC is isolated in her hip/femur she has large sinus that seep pus/blood…
reaching out to Mayo for help!

REPLY

I am happy, my sharing was usefull.. And I hope the same result to all of you.

REPLY
Please sign in or register to post a reply.