1. < MAC & Bronchiectasis

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

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

helen1000 | @helen1000 | May 2 7:01am
In reply to @knully "I have definitely been feeling foggier and more fatigued in general since starting treatment. The duration..." + (show)
@knully

I have definitely been feeling foggier and more fatigued in general since starting treatment. The duration and intensity of MAC treatment is emotionally and physically taxing.

Jump to this post

Fortunately I have not felt much about hoarseness and hearing loss. I will cross my finger everyday.

REPLY
deestrada | @deestrada | May 2 4:37pm

I used the Amikacin IV for 3 months and did notice a slight issue with my hearing. Not bad. I tried the inhaled Arikayce and went to the hospital after the second dose. Severe breathing problems and disorientation. The one cavitation I have has remained stable and the MAC is dormant after two drugs and 11 months. I will continue the two drugs until next year. Meanwhile I am dealing with bronchiectatsis complications as well as drug interactions with my heart meds.
My biggest irritant is bloating and lack of appetite due to intestinal issues from all the medications. I use a probiotic and drink an Olipop, prebiotic with veggie fiber, but not consistent results. Anyone else dealing with this issue? I welcome your experience and suggestions!

REPLY
blm1007blm1007 | @blm1007blm1007 | May 3 6:51pm
In reply to @helen1000 "I took amikacin inhaled and three oral antibiotics for 4 months but cavity shrank only 5%..." + (show)
@helen1000

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.

Jump to this post

Great news Helen.
I just now read your post. Who, what pulmonologist, are you working with after your visit to NJH.? Local or otherwise?
Barbara

REPLY
deborahhow | @deborahhow | May 3 6:51pm

Lack of appetite, for sure. It's the most difficult thing I've dealt with through MAC and bronchiectasis. 5' 10" and down to 108 pounds is not healthy. MAC with bronchiectasis just doesn't want you to keep the weight on. Thanks for the thought about the probiotic. I'll give it a try.

Thanks also for sharing your experience with Arikayce. I was so hoping it might be "the answer" but now I'll temper my hopes. I wish I had some advice for you, but at this juncture, I just don't. Sorry about that!

REPLY
View MoreView Less
Please sign in or register to post a reply.