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Have you decreased Airway Clearance from 2 down to 1 a day?
I have had Bronchiectasis and mucoid pseudomonas for 15 years. After multiple PICC lines, I learned about ACTs 5 years ago from NJH, where I went when MAC was found after a bronchoscopy. I apparently cleared the MAC. NJH put me on inhaled Tobramycin for 18 months then switched me to Colistin because of Toby’s side effects. I have not had any exacerbations for almost three years.
I started Brinsupri in November 2025. At my follow up with Dr. Griffith at NJH, my CT scan was stable, my lungs are less inflamed, and my bloodwork shows less inflammation. All good news.
I have been feeling the burden of all the nebulizing, self- care, restrictions, etc. that is common to us all. I surprised myself when I started crying as I explained how 5 years of twice a day airway clearance has worn me out.
Dr. Griffith said that chronic illness burden is real. He suggested that I go down to once a day doing my airway clearance routine. He said I am stable enough and the Brinsupri should help me stay that way.
I’m excited to think I can nebulize in the morning and not have to schedule my day around a second session. So, why do I feel scared? I’m nervous that once a day won’t keep me healthy and I don’t want to go back to being as sick as I was when all this started. I know I can always add in a nebbing session if I feel something coming on. Have any or you faced this? What tips can you give me for going down to once a day?
Many thanks!!
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@irenea8 i’m feeling great. From almost everything that I’ve read. I thought we were supposed to be able to expel mucus, regardless of how we were feeling. I’m leaving next week for NJH and I know that they will answer a lot of questions as they put me through med tests and assess my lung condition. I’m sure I’ll get a lot of answers from them as to what should be.
Thank you so much for your input. I thought that perhaps my lungs are just clear, but I was always able to bring something up before. So I expect that to be always the case but perhaps not. Thank you again.
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1 Reaction@toni4501
I also wonder about that. My experience is that when I do not have much infection (only occurs during or immediately after IV antibiotics for one week) then I do not produce hardly any mucus and I feel better. Once the infection builds back up which it does quickly then the mucus begins again and I start to feel sick again. If we have BE would we not have mucus to clear even without any infection going on? Clear mucus?
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1 Reaction@irenea8
No one seems to be able to answer why I have so much (clear/white) mucus. Some specialists have said my mild BE could not be responsible for the volume. My recent shortness of breath is responding to an antihistimine, so, despite no blood test evidence of allergies (ie inflammation) it would appear I have an allergic reaction to something - yet to be tested again by skin prick. One GP said BE was a constant state of infection. Maybe in 50 years time these questions will be answered.
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1 ReactionHello @pjas972j
I have also cut back to once a day. I’ve only been on Brinsupri for going on two months now, but I feel my mucus has decreased so much that I am barely even expelling the inhaled saline. I am confused also, because of course the fear is that my lungs are storing it up rather than getting rid of it. However, I feel good. Every once in a while, I feel my usual shortness of breath and use my inhaler. I have a little dry cough once in a while. Do you have a case manager calling you periodically to get your feedback on your experience with the medication? I was going to ask her if this is common. Also, the pharmacy who provide the med had a wonderful pharmacist who spent a lot of time on the phone with me. I was thinking about calling him also. In the meantime, i’m still down to just doing air clearance once a day, and am thankful that I’m not sick.
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2 Reactions@narelled23 Curious if you have had an endoscopy to explore if the excess mucus is related to something gastrointestinal?
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1 Reaction@scoop
I have had them but not for that reason and not for around 6 years. However because of the lung gut axis I have been thinking of exploring whether pro/prebiotics might make a difference.
Thank you Scop for asking. Was there a particular reason for your question?