Big 3 didn't work for MAC; have now acquired fungal pneumonia

Posted by jeannie55 @jeannie55, Jan 20 12:20pm

Hello... this will probably be a long post!
In the spring of 2022, my PCP ordered a pulmonary function studies test because of my chronic cough. After questionable results, I was sent to a pulmonologist. Results of his testing indicated that I had alpha1, bronchiectasis, and MAC. My pulmonologist sent me to an infectious disease doctor.
I was 67 then, had always been active (tennis, long distance running) but the ID doctor recommended the Big 3. Part of his justification for prescribing them was due to my family history of heart disease. My dad died when he was 45, and I take meds for atherosclerosis.
I took the Big 3 for 18 months with many problems from heartburn.
I cannot produce a sputum sample. I had CT scans every 6 months and the MAC didn't progress; it also didn't go away.
In October 2024 a CT scan showed some additional nodules, and my ID doctor ordered a bronchoscopy. It has been determined that I still have MAC and now have aspergillus fumigatus. I have started on a potent (with a lot of side effects) antifungal. I will take it for 3 months and then repeat the CT. In the meantime, the MAC sample from the bronchoscopy is undergoing a sensitivity test to see if any other antibiotics might work.
My question (finally) - any comments, opinions, suggestions, etc.? I have had confidence in my ID doctor until fairly recently but not so sure now.
If you've read this far, Thank You!

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bayarea58 | @bayarea58 | Jan 25 1:56pm

For myself, I would be concerned if after 6 months of Big 3 treatment I was still positive for MAC and my medical team did not raise with me the possibility of adding Amikacin or Arikayce. I am not recommending either, they are powerful drugs with serious side effects and it is a very personal decision whether to go on them. But my concern is that it seems that discussion did not take place at the 6 month mark (or earlier if you have cavitary disease). To me, that suggests you are not with MAC specialist. If that is the case, my suggestion would be to seek out at least a second opinion from a MAC specialist.