Chlofazamine Clinical Trial Experience and Watch & Wait

I was diagnosed with bronchiectasis in 2015 and MAC and H-infulenza in December 2023. Treatment for H-flu helped greatly with fatigue and lessened the severe cough. A CT scan in 2023 compared to the previous one in 2017 showed some progression of disease, but not that much for 5 or 6 years, especially since I did not start any airway clearance until late 2023. My pulmonologist wanted me to start the Big 3, but I opted instead to do a 6 month clinical trail with Kevin Winthrop, ID doctor as OHSU. It involved three trips to Portland, at beginning, mid-point, and end of trial for testing and reporting, taking either a placebo or Chlofazamine for 6 months, sending sputum samples every other week, and having an ECG once a month. I did not turn tan, as 75% of people do, and did not notice any other side effects, so assumed I was on placebo, but Dr. Winthrop said my ECGs showed a prolonged QT interval, which convinced him I was on the real drug. Since it's a double-blind study he is not told who gets drug or placebo. Nor does he see results of the sputum cultures.
I saw him last week for the end of study. I still have my cough, and it can fluctuate, but I'd say is a bit improved, and I still produce a good amount of sputum daily. With bronchiectasis I suspect that will always be true. My CT scan showed that some areas (tree in bud or mucus plugs) that were new in May '23 (as compared to October '23) are gone, but there are some new areas. Overall he said, more are gone than have shown up new. His conclusion is that the drug knocked the disease down a bit, but that MAC is hanging out in the area where I have the original bronchiectasis, and sending out "starters" which my immune system, nebulizing and Areobika use, are fighting off, possibly with the help of the Chlofazamine. We will not get results on my sputum sample for another eight weeks, and I have a follow up visit in May at which time we'll have another "what's next" discussion. Hopefully airway clearance (and walking 2 miles a day) will continue to keep me relatively stable.
I am glad I had the opportunity to participate in this trail, happy that my mild symptoms and slow progression allow me to do that, and so grateful to this group and NTM Info and Research for the support and shared information. This is where I learned about the Aerobika and all the nitty-gritty stuff about nebulizing and airway clearance.
Thanks and my best wishes for good health to all of us.