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Big 3 didn't work for MAC; have now acquired fungal pneumonia
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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I haven’t had to take big three, but just want to wish you luck in figuring out the best course for you and bump it up for those who’ve dealt with it.
I have a similar history but over 6 years including the bog3+ for 40 months. I've been on voriconazole for 2 years now for aspergillus.
I took the Big 3 along (13 months) with inhaled Amikacin (8months) and my sputum samples always showed Negative and my cavity finally closed. It wasn't until they added Amikacin did the cavity actually close. During that treatment I developed a new cavity and the Bronchoscopy showed Aspergillus and Abscessus which totally shocked me. NJH started me on 6 months of Voriconazole and yes you are correct the side effects aren't great (skin rash, loss of hair, etc.) but I will finish that on February 1st. The Abscessus has been at a low colony count so they are not treating that yet. I know you can't treat both MAC and Aspergillus with all the same drugs so they need to get a better plan on what needs the most attention at this time. That is what NJH is doing for me.