Thanks, Sue, for writing this up. I listened with one ear also. I know a missed a lot and look forward to the rerun. This is what I remember from the webinar but I've read so much about this drug that's it is possible I am conflating several sources of info, so tread carefully!

The molecule was discovered in 2016 by one bio company and then sold to Insmed, who then developed it into brensocatib.

Dr. O'Donnell cited adverse events (side effects) from the NEJM article. Hyperplasia skin thickening (she showed a photo, looked like calluses on hands) she cited 1.4% on 10mg, 3% on 25mg, and 0.7% on placebo. Interestingly, periodontal issues/gingivitis was 1.4% on 10mg, 2.1% on 25mg and 2.7% on placebo. So, those on the placebo experienced more periodontal issues/gingivitis than those on Brensocatib! From my understanding, these side effects are reversible once the drug is stopped.

It takes a while to work (24 weeks) because the neutrophils are produced in the bone marrow and the body has quite a store of them. Apparently, it's a slow process to produce new ones and replace the old neutrophils in the body. It's the neutrophil elastase, an enzyme, which causes mucus to become sticky and hard to clear. More neutrophils recruited to the lungs due to infection and inflammation, therefore more neutrophil elastase and more gunk! Brensocatib reduces neutrophils elastase activity and theoretically, the gunk.

I had hoped to hear more details about specifics on brenso might improve daily life but I guess that was not measured by its parts. The QoL (quality of life) percentages were modest on the 25mg dose. Also of note, the clinical trials were run during covid times. We were all so careful then and were not exposed to cold viruses, flu etc as much as during non-covid times.

My pulmonologist recommends I start with the 25mg dose and I am moving forward through the process. I'm anxious to slow down the vicious cycle of bronchiectasis. If there are untenable side effects I will stop the drug.

Thanks a lot Sue! It is so helpful! Also with AI developed, I always feel antibiotics invention can have a breakthrough which is to say, maybe we can find a med that cures MAC in the near future!

Thank you Sue and scoop

Idk exactly which type of NTM I have, but most likely it’s MAC and bronchial changes have happened so the bronchiectasis is relevant. Thanks! Jolene Jones

Here are some resources Sue put together.
https://connect.mayoclinic.org/discussion/resources-for-the-abcs-on-bronchiectasis-and-mac-ntm/

Thank you for the resource! So far I have no results on what I have. And fortunately, my CT scan just says bronchial changes in right mid and lingual areas. So I take that as the beginnings of bronchiectasis? My goal is to do what I can to preserve the health of my lungs. My doc has already said my lungs are not bad enough to treat any bacteria with antibiotics. My pulmonologist is most familiar with interstitial lung disease. I was placed with him because a radiologist noted “mild chronic intestinal lung disease” on my X-ray this summer. That started the research as to what was going on with my lungs. Within the Pulmonology group there is someone more aligned with NTM but I haven’t researched for ones more aligned with bronchiectasis.

Right now I feel fine. I only feel bad when I get a cold which always settles in the lungs, makes me cough for months and lowers my O2 SATs. Thank you so much for your reply! I hope you are doing well yourself.

I wanted to follow up on the resources you have sent. I am so excited to work on the manual lung clearing techniques! This is the resource I was having difficulty finding. I could find lots of information on NTM, but not on the clearing techniques. I’m also glad to have a community to join. Thank you again so much for!