Brinsupri experience after 3+ months

@scoop Thank you! I'll listen to it. I would think it would be difficult to conclude whether or not Brinsupri could negatively impact one's immunity to NTMs, if mildly impacted.

@scoop
Well for me every day is alike. Same amount of sputum every day. My pulmo warned me that for some people Brinsupri does not work. I asked about gradual or subtle improvements over time since it would be unlikely that suddenly in 4 or 6 months it works! By the way, AI says 6 weeks is about when it can kick in (or longer). So far after 3 weeks I notice no improvement at all. I should think one might notice some very small indicator by now.

@irenea8 I am currently in my ninth week, no side effects. In my case the improvements have been very subtle, but consistent. By week five, it dawned on me my cough was better, and my mucus both thinner and diminished. My air clearance daily became easier. By week seven, again subtle,my fatigue was lessening. When I use my start date, Dec 4th as a benchmark….its more revealing. When I compared my slow treadmill workout then, and daily step count from then to now both are very much improved now! Before Brinsupri I’d have one or two manageable days a week, and the rest pretty rough. Now( since week five) the days are consistent, with only a rare bad day occasionally.I’m encouraged for even more improvement in the weeks ahead.Hope this helps, and good luck on this journey. Jeanne

@irenea8 Think positively with patience!

@kathyjjb
Yes, neutrophils do play a role. However, the neutrophils associated with Bronchiectasis are not normal and do not act in the same way as normal neutrophils in people without bronchiectasis.

@irenea8 Irene...I believe that I was living with a degree of BE without an infection for several years. I believe that it had reached a point in time that it was showing it's ugly head by my bringing up a small green substance (probably a mucus plug) every so often. With time it increased.
So just as it takes time, possibly, for BE/MAC to start showing its 'ugly head' and find it's way into us .......it may be the same with trying to reverse some of what we can reverse with medications????
We are all hoping and wishing for you, and each of us, what we want....improvement. Something we want desperately...This I know you know: "All good things come to those who wait." We sometimes just have to 'wait' and I know you know how to do that.
Thinking of You.
Barbara

@cwal That's interesting. I wasn't aware of that. Will definitely read up on it prior to starting. Thank you!

@irenea8 Dr. Anne O'Donnell speaking on Brinsupri at the North American Bronchiectasis and NTM Conference.
Not sure if this was posted elsewhere.
Dr. O'Donnell did address the time factor of when to expect to see changes/results for it working.

I have been on Brinsupri for 5 months now. Started on 25 mg and within a month I developed a body rash all over my trunk. Coughing had intensified to the point I was exhausted after each coughing session. I chose to cut in half as to not give up completely on the drug. Rash slowly went away and coughing reduced considerable with my typical off and on coughing jags throughout the day. When I would lay down to cough, they were very hard coughs that produced a lot of phlegm. 1 month ago I thought my body might be use to the drug better and I raised the dose to the full 25 mg. My rash has come back completely. I saw my Stanford doctor today and he looked at my rash and told me to reduce it back to 1/2 dose. I’m feeling disappointed because I was excited to start the drug in hopes of less exacerbations. Hopefully half a dose will still help.

@patti55 Interesting to know that splitting them is an option. Hoping it works for you.