Brinsupri for MAC and BR? Any good results!

In a recent webinar, a research physician noted that some of the most important questions may only be answered during Phase 4, which is the period after a drug is approved and used by a broader, more diverse patient population.

Among the questions they hope will be answered:
1. How will people with NTM disease respond to Brinsupri?
2. How will people with coexisting conditions, such as autoimmune diseases, and cancer respond?
3. For those with bronchiectasis, will Brinsupri have any effect on the underlying bronchiectasis. Could it improve the BE, slow its progression, or even possibly lead to reversal of airway damage?

I hope you'll hear from others who have NTM and are taking Brinsupri. I do not have NTM and I've been on Brinsupri 25 mg 9+ months, and I can say that my symptoms have improved quite a bit. It wasn't an overnight change. It took more than six months before I began to notice a meaningful difference.

I have MAC, BE and have struggled with multiple bouts of Pseudomonas for several years. I had nine months of the BIG 3 antibiotics for the MAC back in 2023 which did not prove effective. Since then I have not had any treatment. My BE has been more difficult as I have had multiple flares which resulted in a couple of inpatient hospital stays as well as the at-home administered antibiotic Cefepime via PICC line. I am taking nebulized Colistimethate twice daily after airway clearance to control the colonized Pseudomonas. In February of this year I began taking 25mg Brinsupri. I did not notice much change at first but now that I am beginning my sixth month, I am definitely seeing a change in my symptoms. There is considerably less coughing and less mucus production and I have more energy. I have been walking four miles a day which really helps strengthen my lungs. There has been discussion on what the effect Brinsupri has on MAC. For me, over the last four years, I have tested positive to MAC on every sputum sample I have sent to Mayo Clinic. Surprisingly the most recent sample did not show any MAC growth after 42 days of incubation. It could be the sample might not have been viable but it does make me wonder if the Brinsupri has something to do with it. I have a video appointment with my Mayo pulmonologist tomorrow so I will be very interested in his analysis. I am sure he will want me to submit another sputum sample to verify the results but in the meantime, I am feeling good. I am not experiencing any of the side effects listed as possibilities with the Brinsupri. I did have a couple of BE flares that were easily treated with Prednisone and Amoxicillin-Clav after being on Brinsupri for three months and then again at the five-month timeframe but all is well now.

MAC patients were excluded from the Brenscotib trial. We are advised not to take immunosuppressants

@reneemc
https://pubmed.ncbi.nlm.nih.gov/41682938/
Brinsupri is not a traditional immunosuppressant. It's a targeted anti-inflammatory medication. Calms overactive neutrophils (white blood cells) that cause ongoing lung inflammation. Steroids, a traditional immunosuppressant, suppresses the entire immune system. Brinsupri on the other hand, targets a specific pathway. It helps reduce inflammation and leaves the rest of the immune system intact.