Arikayce for cavitary MAC

Posted by knully @knully, Apr 13 1:29pm

Hi all,

New here and hoping for some advice and reassurance. I was recently diagnosed with MAC after a cavity was found on a CT scan during a hospital stay for something completely unrelated. I was sent to a specialist for further testing which led to a bronchoscopy that eventually came back positive for MAC. I am under 30, asymptomatic, have never smoked, and have no known health conditions, so we are all pretty stumped.

I have just started azithromycin and ethambutol a couple of weeks ago, and will soon add clofazimine and inhaled amikacin (arikayce) to the mix. We have decided to go with inhaled over IV due to my existing tinnitus as well as hearing issues that run in my family. From all I’ve read, IV amikacin seems to be strongly recommended for treatment of cavitary MAC, while the benefit of arikayce for cavities is still unknown (from the few studies I was able to find). I am wondering if anyone else has tried inhaled amikacin/arikayce over IV for cavitary MAC, and if so, what their experience has been.

Thank you!
-K

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Rick | @rstel7272 | 6 days ago

I did IV and later inhaled. In my case, I'd say the tinnitus was worse with the inhaled. I'm more complex than the average case, I have a lot of scar tissue in and around my cavity that still exists 7 years later.

reneemc | @reneemc | 6 days ago

I did IV Amikacin for 2 months and now I’ve been on Arikayce for 13 months, very little reduction in cavities

helen1000 | @helen1000 | 4 days ago

I took amikacin inhaled and three oral antibiotics for 4 months but cavity shrank only 5% ( from 2.1cm to 2cm) from August 2024 to December 2024.
Started arikayce last month and my cavity shrank another 10% ( from 2cm to 1.8cm) since December 2024. I believe it is largely due to Arikayce.
In addition, I had 2-3 cavities last year but today's CT showed only one cavity. All other nodules and cavities are gone.