Side effects of Arikayce

@luxenbourg

I was on Arikayce plus Ethambutol and Azithromycin for 9 months. I was diagnosed with Bronchiectasis 5 years ago but no pulmonologist suggested ANY treatment and a year ago I was diagnosed, last May, with MAC. At that tine it was because I complained to my primary I was starting to cough up green sputum and she recommended a MAC test and when it was positive she sent me to an Infectious Disease Dr. I have a very good one and he started me on inhaled Arikayce and the other two pill meds late August 2025. My pulmonologist put me on Levabuterol twice a day to nebulize plus the big three. The inhalants were toxic on my throat but a new pulmonologist took me off the Levabuterol and put me on 3% Sodium Chloride once or twice a day before the Arikayce in late December. That helped some, but I had lost weight, had copious sputum and hours of coughing every day, very hoarse voice and terrible fatigue Everything got a little better over time until I started having hissing in my ears and reduced hearing and the ID Dr. took me off Arikayce very recently (tomorrow is June 1) and substituted Rifampin pills and my voice and throat are startig to heal. I have been testing negative for MAC for several months but they want me to contiue MAC meds until December to make sure MAC is cleared for good. I still have fatigue, but less cough and sputum on Rifampin, Ethambutol, and Azithrmycin with nebulizer once or twice a day with Sodium Chloride 3%- still some of that and shortness of breath but not as bad, some fatigue. gained back some weight, some walkig. I have heart issues as well which complicates things and have had a pacemaker for aflutter and afib implanted in October 2025 and a Watchman implanted in April 2026. I am improving and walking again most days. Normally Arikayce inhaled vs. IV does not cause ototxicity but I read the literature from Enlighten and it specifically mentioned ringing or hissing in the ears as signs of ear toxicity and to call your Dr. if you have those symptoms of toxicity in the ears which I did a couple weeks ago and he took me in and changed me over to Rifampin the next day and to eliminate Arikayce. So far so good. I find it a shame the pulmonologists didn't recommend at least pulmonary hygiene the last 5 years. I live in FL where there is lots of bronchiectasis, and MAC, as I am only recently finding out! Earlier treatment could have helped. I am 82 years old and was very healthy until this last difficult year, but improving.