Hi Helen1000,
I too was put on Arikayce after 14 months on the Big 3 (the only symptom noted was fatigue). Arikayce may have helped me convert to negative for NTM/MAC in 30 to 60 days from starting the drug but unfortunately, it outlived it's usefulness shortly thereafter. (protocol called for remaining on Arikayce for 12 months from the month you converted.) My symptoms by
by 11/24 were full blown. Terrible vocal cord problems, a 50% loss of breathing capacity/shortness of breath and could not walk more than 200 feet without leaning against something to catch my breath and forget going up stairs or a hill. Also tremendous fatigue which did not permit me to exercise or play tennis. My Pulmon and ID Docs came to the conclusion that I needed a holiday from Arikayce and within 3 to 5 days the symptoms subsided. We all think that perhaps patients like myself who also suffer from COPD/Emphysema may have a harder time tolerating Arikayce. The doctors said that my case was the most severe they have seen.
Good luck with all and onward and forward we go,
Flo