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Boehringer Ingelheim AIRTIVITY clinical trial
MAC & Bronchiectasis | Last Active: Jul 6 7:30am | Replies (48)Comment receiving replies
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.
Replies to "Paula - Have you tried reducing the intensity or duration of your airway clearance to see..."
Thanks Sue,
I have been negligent about reading or contributing to these discussions this past year. I just couldn't feel "better" any more. This possible new drug and your suggestions for "overdoing" airway clearance, have given a bright spot to look forward to. Thank you.
I appreciate this comment, as I have been working too hard to clear my lungs. And my airway & lungs have been feeling very irritated along with getting sore throats. I thought I was supposed to get everything out and it just is so irritating. I am going to try and cut down the time I use to nebulizer and clear my lungs. Which brings up another subject of poor education from pulmonologist who do not understand, have the time, nor care to educate their patients. I had NTM in 2002 & having been seen by pulmonologists in 5 states since and none of them attempted to really educate me on airway clearance – they're only information was use a nebulizer use your aerobika but no one really attempted to explain the whole process to me. I am an educated person and do all of my research and yet I still have been doing it wrong. Thank you so much for helping to educate others.
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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