New aspergillosis albans dx on top of bronchiectasis and ntm abcessus

Posted by tglatthorn @tglatthorn, Jul 20 3:48pm

I have had NTM abcessus and bronchiectasis since 2018, which was diagnosed when I had pneumonia that didn’t respond to typical antibiotics. I I recovered from the pneumonia and was put on “wait and see”. Over a year ago my Penn ID doctor told me it was time to treat and I took Clofazimine and two other big antibiotics for 5 months. I never got to a negative culture and I felt like I was dying, so I quit the treatment. Recently I had two negative monthly cultures but the next time my culture showed abcessus again and also added aspergillosis albans. Do I have to go back to treatment now? How did this new infection happen? Is it risky?

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Sue, Volunteer Mentor | @sueinmn | Jul 20 9:06pm

@tglatthorn Bummer! Now is the time to add a bronchiectasis expert pulmonologist and/or infectious disease doc to your team. Since what you have is now considered "refractory" or hard-to-treat infection, you might want to consider finding a center of excellence - here ishow to locate one:
https://connect.mayoclinic.org/discussion/the-bronchiectasis-care-center-network-33-centers/
Have you talked to your doctor(s) about a plan yet?

tglatthorn | @tglatthorn | Jul 21 11:00am

Thank you Sue. My pulmonologist and ID doctors are with U Penn, which is a center for excellence, I think.
We are messaging through the portal. I haven’t heard yet if they have a new plan.

smtdoc | @smtdoc | Jul 22 7:11am

I agree with Sue. For me, treating the Aspergillus was really easy, well tolerated

mmc26 | @mmc26 | Jul 23 10:57pm

This is my first post/reply. I got ABPA (Allergic BronPulm Aspergillosis) in 2024. Have always had asthma, controlled with sprays.
How did they easily treat Aspergillosis? If I read correctly. I didn't a year in Prednisone, then cut that off (yea) and now on birth NUCALA (9 mo) and Brinsupri (3 mo) given damage of long ABPA treatment(?) Thanks.

smtdoc | @smtdoc | Jul 24 7:36am

I at first took Sporonox but at 6 weeks started having vomiting and ringing in my ears. I was then switched to Cresemba. The loading dose days were hard but after that it has been easy.
I gave Brinsupri, 3 mg two trials but with both my blood pressure went dangerously high and took a few weeks to come down when I had to stop that Rx.
I also was already on Nucala and had been for years so not quite the same. In my case using prednisone would have made it much harder to treat the underlying infections so no prednisone and no steroid inhalers.
We are all different!!

Sue, Volunteer Mentor | @sueinmn | Jul 24 9:01am

In reply to @smtdoc "I agree with Sue. For me, treating the Aspergillus was really easy, well tolerated" + (show)

@smtdoc Maybe you can help @mmc26 since you had successful treatment for aspergillosis?
https://connect.mayoclinic.org/discussion/new-aspergillosis-albans-dx-on-top-of-bronchiectasis-and-ntm-abcessus/

smtdoc | @smtdoc | Jul 24 1:38pm

thanks- already responded but think the allergic element sets her apart. For her, steroids were a mainstay and for me, both oral and inhaled steroids were off limits