Boehringer Ingelheim AIRTIVITY clinical trial

Yes, that's great to have the option of starting the real drug after the trial. Good to know about the person in New Zealand, who was on the drug during the trial and that it was life-changing. I would love if someone could expand on HOW it was life changing!

I did register and was called and did not qualify. I do have NTM and few other conditions.

She frequently felt unwell and experienced multiple exacerbations each year. These recurring illnesses disrupted her ability to maintain full-time work, leading to significant anxiety.

Living alone, she often felt vulnerable and uncertain about her future. The demands of daily airway clearance and exercise routines consumed much of her limited free time.

Brensocatib changed everything. She now feels clearer, both physically and mentally, and has reclaimed valuable time in her day. Although she was eligible to retire last year, she felt well enough to continue working a bit longer—giving her the opportunity to boost her retirement savings so in addition to buying a small home she might also travel.

What a success story. How fabulous for her! I hope the rest of us are as fortunate as she.

Do you think this means that she was able to scale back on airway clearance? Or maybe brensocatib reduced the phlegm so clearance times were shorter? We all know that everyone is different, so we'll just have to wait and see how it works for each of us. Fingers crossed. Thanks @becleartoday for sharing such a positive report.

I was also rejected Sheila - the lady stressed they were trying to find a "wide cross section of the population across the world." Maybe a little old lady in the US with other health issues (what was always thought to be the "typical" bronchiectasis patient) wasn't a good fit. 🤷‍♀️
I have to admit I wasn't too sad after she said it would require 18 months "or more" for the trial, 8-10 lab/doctor visits in person as well as video visits in between.
I hope someone here gets into the trial so we can hear how it goes.

I also was not too disappointed after thinking about the whole process. I had pretty much decided I wasn't going to participate for same reasons as you. Enough pills already!

I have been placed in sort of a "queue" for the University of Michigan. Apparently U of M is not quite ready yet. So when they are up and running we shall see if I make it into the study. I am going to give it the old college try as they say. I will let you all know how it goes. For me if I could decrease the volume of sputum it would be a godsend. My cultures lately have been negative but the volume is about 60 to 120cc per day and that has impacted my quality of life.

Paula - Have you tried reducing the intensity or duration of your airway clearance to see if you are inadvertantly increasing your sputum production?

Here is what I mean - you airways need mucus to function. If during clearance you strive to get to zero mucus coming out, your body will respond by producing more mucus to coat your airways, leading you to more coughing and clearance... It can become a vicious circle. The goal is actually to keep stagnant mucus from pooling and becoming a harbor, not to get rid of all mucus.

Seven years ago, I was taught buy an old-time respiratory RN to clear for 10-15 minutes and stop. If I later coughed up a bit more, so be it. I was pretty sick with MAC and Pseudomonas at the time, so I cleared for 15 minutes 3 times a day.

When I changed pulmonologists and stared using 7% saline, everything I was reading was about people clearing it all out, so I tried - often for 30 minutes or more. The result - sore throat, sore ribs, more mucus - misery. My new Pulmonologist had a staff RT, and when I complained to her, she said "You're trying too hard. 15-20 minutes AT MOST." Then she explained about doing too much and creating more mucus. I backed off, only doing more during an exacerbation.

Now, infection free for over 5 years, exacerbation free for 2, I do airway clearance for 5-10 minutes once or twice a day after using my inhaler and exercising. I had stopped 7% saline with my pulmo's blessing, but now have restarted 1-2X/week because it helps during smoke/allergy season.

There are a couple other people on this group giving shorter clearance a try - I'll see if I can remember who, and ask how they are doing.

This may be the wrong thread for this comment, but - (as relates to mucus production and time spent on airway clearance)

I have BE and MAC with nodules and 3 relatively small, stable cavities diagnosed 4 years ago. I had 10 months of treatment for aspergillosis with itraconazole in 2022 or 2023 . No treatment for MAC yet - on the watchful waiting plan. During the first few years I had multiple episodes of coughing up blood and clots, but much less of that now. In that context -

Over the course of the last year or more I had increasing amounts of purulent mucus - varied colors, often green (yuk!) and three exacerbations (H.influenza or Homophaelus -sp) treated with azithromycin. I always felt some better after the antibiotic, but I was spending upwards 45-60 minutes of doing various airway clearance techniques after nebulizing, and bringing up ugly stuff even in the last 15 minutes. The whole process of nebbing and clearing was taking an hour and a half - at least!

Two weeks after finishing the antibiotic for my last exacerbation I still felt poorly and on my regular check in told my pulmonologist I was having a tough time. She had me submit another sputum sample which still showed an H. influenza infection. She decided to try a different antibiotic - a cousin of penicillin tolerated by people allergic to penicillin. What a difference! I'm hardly producing any mucus, am at ease with breathing, hardly cough, and have a normal speech pattern again. I haven't had this many days in a row like this - it's been almost two weeks now - for over a year. I think the azithromycin never cleared the first infection.

Sorry for the long post. Just wanted to share what I learned. I'd thought I'd permanently declined over the last year and this was my new normal so didn't think to be more proactive until this last exacerbation.

My personal take-away;
- Don't be reluctant to contact your pulmonologist about how you're doing.
- Ask to submit sputum samples more frequently
- Ask to do another sputum sample after completing antibiotics for an exacerbation if you're not a lot better . I didn't know this was sometimes routine to see if a given antibiotic has worked.

Leslie

Hi Leslie. Can you tell me the name of the antibiotic you took that is a cousin to penicillin? I’m allergic to penicillin so I would love to know if there is another drug I can use if needed.