Arikayce & air trapping?

Posted by lvnl @lvnl, Dec 19, 2024

Hi all, has anyone on (inhaled) Arikayce developed air trapping? I am on month 3 of daily ethambutol, Azithromycin, and inhaled Arikayce or placebo (in a clinical study). After some initial improvement my cough and fatigue worsened substantially & my pulmonologist team suspected air trapping due to inflammation triggered by the Arikayce (or placebo?). This is an asthma-like reaction. I started Albuterol before airway clearance and Arikayce inhalation, which has helped a lot. Pulmonary function test confirms air trapping (even with great improvement). The docs reassure that this is a common side effect that resolves when I go off the med (or placebo although this would seem to indicate I'm getting the med). Has anyone experienced this, and what was the outcome? Many thanks for the wealth of information and shared experience here!

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jassa | @jassa | Feb 15 2:30pm

Yes I’ve experienced 12 out of the 16 listed side effects. That includes extreme fatigue and shortness of breath as the most common. I have found the best schedule for me is 3 days on 1 day off. My body needs time to rejuvenate itself on the one day off. All of the side effects have subsided substantially. I told the nurse from Arikayce and she applauded me for pushing through it, and reminded me it’s not a sprint but more of a marathon. I am fine with that. I do see improvement. I’m on week 33.

irene5 Irene Estes | @irene5 | 1 day ago

I was on Arikayce years ago for a long time. I developed air trapping and still have air trapping many years post arikayce. I am truly not sure that the Arikayce is responsible for that. Irene5

lvnl | @lvnl | 1 day ago

@irene557 and @jassa ... Thanks much for sharing experience. I'm now in month 9 of Arikayce (or placebo) & docs thinks the mild wheezing & somewhat elevated blood levels of eosinophils are more indicative of possible allergies (plus I've had 2 respiratory viruses in last few months). Plus air quality here in NYC has not been good ... So all in all, who knows? We'll see with ongoing monitoring.