Bronchiectasis, then MAC- Now What?

Posted by nana43 @nana43, Feb 18 8:36am

Looking for experience and knowledge. Diagnosed with Bronchiectasis in 2018, MAC in 2022. Did Big 3 for 18 months and “cleared” MAC 2024, however continued to have 2-3 exacerbations a year with Psuednomas. Now just got PCR culture back with M Abscessus. (This came up one other time but I was feeling good and CT was stable.) Doc says CT still doesn’t show signicant changes and no cavities even though Ive been sick since Xmas and lost 9 lbs. anyway, he thinks I should do same MAC treatment I did previously. I’m an educated patient but certainly don’t want to do antibiotic IV’s for Abscessus if not warranted. BUT isn’t early detection the key to further damage??

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namd | @namd | Feb 18 9:43am

It is all so difficult to know what to do. I am in a similar situation to yourself. They say that the Abscessus is nasty and needs treatment - different to the one for MAC. I like you have lost a lot of weight. I feel ill on and off and find the cold weather does not help. Do lots of research, ask lots of questions. I do not think I could tolerate the big 3 again. I certainly will not be taking rifanpacin again. I wish you luck with your next lot of treatment. It is so difficult to know what to do for the best. Knowledge is power!

Sue, Volunteer Mentor | @sueinmn | Feb 18 10:21am

@nana43 With your history, you are definitely a candidate for a NTM/Bronchiectasis specialist.
That said, M Abscessus is my big fear - I have been managing well without antibiotics for 7 years, and doubt I would tolerate them again. Fortunately, the experts have more tools in their arsenal than when we were both diagnosed eight years ago.

Are you seeing someone with experience in treating NTM?