Aspergillus after Bronchiectasis/MAC

Have you considered going to an infectious disease specialist. Their education is somewhat different than a pulmonary physician. I found mine to be very helpful.

How about paging the pulmonary fellow/doctor on-call? Have your timelines and info ready. I would ask if I could try a few weeks of concerted effort of Airway clearance before pharmacy treatment. Likely, physician would like rule out any blood-borne aspergillus as well.

One of my sputum samples showed aspergillus niger. I stepped up my airway clearance routine from twice a day to 3 to 4 times a day. The next time I left a sample it showed normal flora so I was able to avoid Pharmacy treatment. If you go on pharmacy treatment, you need to have your blood monitored every month I believe.

Thanks. I can increase airway clearance. Rather that than medication.

I have considered infectious disease. I live in an area with very poor healthcare. Would need to travel for that. Am presently making plans to move.

I have/had BX & MAC since 2019. Symptoms cleared up in 2022 enough to stop big3 but only to get aspergillus a few months later. There are 3 meds for treatment. I have been on Voriconazole for 18 months. Another surgery is an option that I have declined so far as the Voriconazole is doing it's job.

The only info I have said treatments for aspergillus are still in experimental stages because not much attention has been paid to treating. Also stated that only 27% chance of successful treatment and patients like us, MAC and bronchiectasis, are high risk. Being close to 70 makes me think treatment probably not worth side effects, etc. Is this info incorrect? Very hard to get complete information, it is like “do it yourself” healthcare here.

I am 79 and have a lung fungi, a newer one called apiotrichum mycotoxinivorans. I am not on any medications for MAC/BE after experiencing major side effects from 2 of the 3 Big 3 drugs. I am on no med for the fungus, at this point anyway, in spite of knowing of its existence for a year now. I use only the Aerobika for airway clearance. Adding the saline/albuterol or any combination of those causes hemoptysis episodes, including, occasionally, the use of the Aerobika by itself. I consult with my ID doctor soon and treatment may change after he views my next CT scan and other tests ordered at that time -- but hopefully no changes for me.

I am, and have been using, airway clearance of Xopenex first, then follow with 7% saline with Hill Rohm vest. Twice a day since Jan. 2019. Never took any medications for MAC, just airway clearance. I had lung surgery 6 mo.before visit to NJH where mass was removed…mass was mycobacteria. Pulmonary doc seems fine with me possibly not wanting medication for Aspergillus, primary care doc is not.

@churlgurl What Rick said I will say “ditto that.” Aspergillosis is treated with Vfend or its expensive alternative Cresemba. Cresemba is a once a day pill whereas Vfend is twice daily. The thing with aspergillosis vs MAC is that aspergillosis is way more treatable/curable than MAC so don’t lose hope ! You are not on your own here. The correct ID doctor can get you on the correct med. Arikayce can cure MAC and Vfend or Cresemba can cure aspergillosis. I am not being a Pollyanna, but whoever told you drugs for aspergillosis are in the experimental stages is incorrect. Both of these lung diseases and their “cures” are no walk in the park for sure, but you certainly aren’t alone to “guess” what to do. I am so sorry you feel that way - some doctors just aren’t in the know about all this. Perhaps you need to find two doctors (ID and pulmonologist ) who are “in the know!” Wishing you all good things! Irene5

Thank you Irene. I truly appreciate your information and hopeful response.