Christine - I have not started the antibiotics due to my feeling well, not having an exacerbation, no longer losing weight (gained only a five pounds back as yet). I turn 83 next month....I am so thankful that so far I feel well and can do all I need to do for myself with my daily BE routine.
FYI and Thoughts:
The highly knowledgeable Dr. Pamela McShane who was at Tyler, Texas now with NIH did not prescribe Rifampin for me when she had suggested I start the antibiotics. I chose not to start the two antibiotics due to all I mentioned above. That was in 2024 and I was diagnosed with MAI in 2023. It is my understanding that Rifampin has been questioned, dropped and not being prescribed, by many pulmonologists treating BE patients. There is information on the internet that states the reason why it has been dropped by some pulmonologists. There is information from the NIH on it. I found it by Googling: Factors influencing pulmonologists not to prescribe Rifampin with MAC.
As I mentioned I am replying so you have the information for yourself and therefore food for thought. I am sure you believe that you are your best advocate, you yourself......knowing yourself.
There is so much to learn and know in the beginning. Hope we all are helping with what we have shared with you, what we know and do for ourselves. I learned most of what I know on this site.
Barbara