Thank you so much for responding to my post! It was a feeling of great relief and helpful with the fear that seems to be attacking me. I appreciate your advice to stay in touch with people on this site.

I think you are very brave, to have done all 4! May I ask how long you were on the other 3 meds if you were on Amikacin IV for 4 months? And what was the outcome? Success?

I am almost 69. I was diagnosed with bronchiectasis, MAC, and asthma in 2013 (I was 57 then). I look really healthy but have suffered with the MAC, alongside bronchiectasis, challenging auto immune issues (inc facial swelling, hideous skin rashes and numerous lung infections) for much of this time. I’ve now lived with this for 13 years but having developed an enlarging cavity in right lung and further MAC progression (‘tree in bud’ formation) in both lungs, my hospital now wants to put me on the regime of amakacin (IV for 4 weeks, then nebulised formula) plus ethambutol, azithromycin, rifampacin and, in later months, clofazimine. I am anxious as I already have reduced hearing in left ear and have been told I might have significant hearing loss as consequence of, particularly, amakacin and ethambutol. Also, red/orange perspiration and tears and orangey skin from (I think!) rifampicin. I am seeking an impossible answer regarding expected life span with treatment vs expected/hoped for life span WITHOUT treatment. ie HOW MUCH more (quality) life might I have after the treatment (and as a consequence of treatment) given my age of 69? If the regime (and all the side effects of treatment) will only give me another 2 years compared to, potentially, living, without treatment, for a further 12 to 18 months, I’m struggling to think it’s worth enduring the regime. Any one in the same situation …… or further along from me…… I’d love to hear your stories.