I was diagnosed with MAC a year ago along with H-influlenza. Treatment for H-flu relieved my fatigue and greatly reduced my cough and congestion. When I was reluctant to start the Big 3, after watching videos and reading of experiences on this and other support networks, my pulmonologist referred me to Dr. Winthrop at OHSU. Dr. Winthrop concurred that treatment would likely be needed, but offered the option of being on a drug trial for six months. I chose to do that and started in July on either clofazamine or placebo. I send sputum samples every other week and have an ECG once a month, saw him at the beginning and half-way point for bloodwork and other testing. All will be repeated at the end in January along with a CT scan which will reveal how well my lungs are doing.
I figured I couldn't get more careful "watching" than that. I nebulize 7% saline 2 x daily, use the Aerobika and walk almost every day. Neither he nor I know whether I'm on the drug or placebo. I was thinking placebo since I've noticed no side effects, but apparently my ECG does show an effect that has Dr. Winthrop convinced I'm on the real drug. He doesn't get the results of the sputum samples and will have to do his own and at the end of the trial. That and the CT scan in January will determine what options are open next, but though my sputum still shows bits of green, my cough and congestion are definitely improved.
Either way, I feel good about contributing to the research, and, with any luck, vigilant airway clearance and exercise will be enough to keep my MAC and bronchiectasis from doing more damage. Thats my 2-cents on watching and waiting. Wish me luck in January!
Anna