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Stopping the big 3

Posted by melb0606 @melb0606, 1 day ago

I was diagnosed with cavitary NTM (xenopi) in sept 2024 but have had no symptoms. The cavitary nodule was an incidental finding after a chest xray. I have been on the big 3 since dec 2024 taking them daily. I am young-ish, at 50 with asthma but no other chronic conditions and am generally healthy. Scans over this past year showed the nodule shrinking and general inflammation decreasing but its not completely cleared. I also tested negative for ntm in a sputum test once early in 2025 and was never asked to give a sample again. The ID dr is having me stop the meds and im nervous. Ive handled the meds well and without side effects. I am still happy to stop them but am worried that the infection will come back. They are having me do another scan in feb to follow up. Does this all sound reasonable to you? What are the chances that the bug becomes drug resistant? That scares me most - needing the meds again to find out that they no longer work. Any reassurance or advice is appreciated.

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jlm0614 | @jlm0614 | 14 hours ago

I also have MAC and have been on meds for over a year. I also am nervous about stopping and then having a recurrence. I actually asked my pulmonologist to do another bronchoscopy to get a better sample. I don’t seem to be able to cough up sputum even with the use of a chest percussion machine. I think it’s reasonable to request a scope so a deep sample can be collected.
I am a retired nurse and I know bacteria can develop resistant strains. My worry, too.

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blm1007blm1007 | @blm1007blm1007 | 11 hours ago
In reply to @jlm0614 "I also have MAC and have been on meds for over a year. I also am..." + (show)
Profile picture for jlm0614 @jlm0614

I also have MAC and have been on meds for over a year. I also am nervous about stopping and then having a recurrence. I actually asked my pulmonologist to do another bronchoscopy to get a better sample. I don’t seem to be able to cough up sputum even with the use of a chest percussion machine. I think it’s reasonable to request a scope so a deep sample can be collected.
I am a retired nurse and I know bacteria can develop resistant strains. My worry, too.

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@jlm0614 I find that doing the postural drainage positions, if one doesn't have acid reflux, helped me more than the vest chest percussion machine.
Have you tried all the different air way clearance methods to know what helps you the most?
Barbara

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