Brinsupri (aka Brensocatib)

We all have to make our own decisions, but to me progressive BE seems like a bigger threat to life and well-being than possible periodontal issues from a medication. Best of luck to everyone.

All of this information is so helpful. The comments and replies and investigation I so appreciate. I am in the middle of trying to decide whether to convince my pulmonologist to pursue the brensocatib. I definitely fit the category of 2 or more exacerbations a year with high neutrophil count; the airway clearance nebulizing done regularly and daily is so time consuming. I look for ward to following all your future info. Keep it coming.

My pulmonologist said that only one person dropped out of his clinical trials due to side effects. It turns out, ironically, that the person was on the placebo. Go figure.

I'm not sure, but I don't think adding Brinsupri to your arsenal is going to fix "the airway clearance nebulizing done regularly and daily is so time consuming" - did anyone do the trial and get told that they could quit airway clearance?

I agree. Although the side effect of possible periodontal issues worries me as well, the possible in the wording of side effects does not mean probable. The medication can be stopped if needed. All medications have the possibility of side effects and you know the drug company is going to list them all for CYA reasons.

I have a friend who was in the trial and she has two friends who were in the trial also, and it turned out that they were all on placebo. After the trial they have been on brensocatib given by Dr. Winthrop. After reading all the side effects about the drug, I called her. She and her two friends have been on the drug for two years now, no side effects for them.
Hope this helps.

Ling

It's my understanding that even with Brinsupri airway clearance will continue to be necessary. The bronchiectasis will still be there. It's supposed to reduce the amount of phlegm and in turn potentially reduce airway clearance time, coughing, chest rattles etc. That would be welcome as I detest the daytime coughing jags and the rattling chest at night when I'm trying to sleep. We'll see!

I have been trying a new schedule for airway clearance - saline before sleep - 2 hours before bed, I neb saline, then do a few cycles of active breathing/huff coughing. The nights I do it, I have no 3am coughing jag. Still doing am clearance too.

All of my sputum is now quite clear as well - hardly a cloudy bit to be seen.

Does anyone know if Medicare RX will approve Brinsupri ? I read some of these posts but did not see anything about that. List price $88K without insurance.

Before I do saline my sputum is often a greenish color, similar to when I was coughing up before I was diagnosed with BE and seems to be staying that way. I think after my lavage I was clear for awhile then back to the greenish color. Before diagnosis I was losing some weight and could not explain it but after diagnosis and saline, etc I went back to my old weight level. Not sure what that has to do with it other than infection symptom, maybe...