Brinsupri follow-up

@scoop Scoop- I had my visits with the two pulmonologists and showed them and told them what I was bringing up...the soft yellow/green tint pieces. Both said to me....yes they are mucus plugs.
AI info said....for what it is worth: "Yes, mucus can change from soft and pliable to hardened and even solidify over time in the lungs. This hardening can occur due to a variety of factors that cause mucus to become thick, stagnant, and dehydrated, such as infections, certain medical conditions like cystic fibrosis, and dehydration. In severe cases, this can lead to the formation of hardened "casts" that block airways."
My Pulmonary Function Test, thankfully, continues to be good. Lower lobe plugging is worse than a year ago and both said to me when I mentioned my thought of it being caused by my sleeping on the wedge on my left side every night....both said yes it is possible and more than likely contributing to the build up in that area. Which of course means I need to concentrate postural drainage on my side...right side for left and left for right side drainage. If I've got that correctly.
Scoop I have not any pulmonologist mention "increased polys". I do see you mentioned "lots of neutrophils". I guess that means neutrophils/polys are one in the same.
I think sometimes we forget this...that which you said "Pulmonary treats the patient and not only the sputum culture. "
Present Decision Consideration: So far I feel well, no exacerbations, sputum clear, low load MAI, overall physically strong for my age with very little to no fatigue. energy level is fine (but sure not like it was in my early years) and still not started the antibiotics. At 83 I continue to give thought to starting the antibiotics. Some of our comrades here on Mayo have had parents that had BE and feel/felt sorry and glad their Mom did or did not go on the antibiotics late in life and questioned my going on it at my age with a low MAI load. I certainly understand their question to me early on "why" you feel well and it's a low load. etc. etc. "why do the antibiotics." I am now giving thought to the idea of 'trying' the antibiotics .....I am beginning to feel I need to go for it and try to clear the low load of MAI. Decisions, decisions....they probably will not end due to the BE and living life with it and time dealing with the changes of the body with time.
All thoughts are welcomed and appreciated.
Barbara

@blm1007blm1007 I'm curious about why are you considering antibiotics now, when it seems your self-care routine has you stable.

Do you have any worsening symptoms? Does your CT show increasing nodules or cavities? Is your bronchiectasis becoming more severe (based on images)? Is the MAI "load" increasing in your sputum cultures?

I'm thinking about what I would do in your place (at 74), and unless my answer was "Yes" to at least three of the questions above, I would not entertain antibiotic therapy again. I quit before I was negative, continued 7% saline & airway clearance. My last two sputum cultures (2 years apart) were negative. I am about to reach 6 years without antibiotics, and I can still recall how awful I felt.

Remember, even on antibiotic therapy, you have to keep up everything you are doing now, so it's not as though they would simplify your life. And the antibiotics are HARD on the body, especially causing fatigue in many people (I was one!), possible unpleasant side effects and weight loss. Therapy will up your self-care burden - scheduling when to take the meds, monitoring vision and hearing, probable need for probiotics...

So I'm really curious what has led you to this possible change.

I started taking Brinsupri 25mg 14 days ago and have not noticed much improvement. I’ve had a few hopeful days but no consistency yet. Mucus is slightly less but still pretty funky looking. My biggest concern is whether I’ll have an improvement in my breathing. I’m 78 years old and have had lung issues all my life but as I am aging, my lung function is worsening. I remain hopeful. This is a good way to learn patience.

@sueinmn Sue, thanks for taking time to discuss all this with me again.
Yes, to only one of your questions regarding it all. Worsening mucus plugging in the lower left lobe. PFT was good. I was not doing my the postural drainage routine on the left and right side.....I am now putting that into my A.M. and P.M. BE postural drainage therapy routines. Hope that will get it up and out, those mucus plugs.
You are truly right about not simplifying one's life. I just came off of being on an antibiotic for an infection that developed on my leg after the dermatologist burnt one of those areas they call pre cancerous, That one antibiotic did change some of my timing and did make me think of what it would be like with doing the antibiotics for BE.
I am so disappointed with having the mucus clearing bouts after I eat that takes a bit of time before the feeling of the need to clear stops. That is what limits me socially. I know I need to find my way around that and I will with giving time and thought to it. Therefore the reason for my possible change of thought about the antibiotics.
Thanks for reminding me of your experience(s). You may not be a financial counselor (that I know of) but you sure are a great BE health counselor for me...THANKS so very much. I needed to hear all you said and asked.
Barbara

@scoop
Still wonder since the most common side effect of Brinsupri was upper res infections. None of us wants to think it is causing side effects so we may talk ourselves out of it, but we also need to remember that it was not tested on people with MAC or Pseudo etc. I guess only time will tell for sure.

Hello out there.
I do not cough. Had only one coughing bout in September in which I coughed up four small globs of gray mucus. Yeah! I had been on amoxicillin for four days for a lung infection diagnosed from a low grade fever, fatigue, oxy levels at 90 and breathing limits. I have been well now for a month while limiting exposure to crowds due to low immunity. My CT scan last month showed the nodules from a year ago were the same size. But much mucus plugging noted in lungs. I have gerd; sleep on my right side for that and have mucus in throat a lot. Spit up when I can. Why don't i cough. How do I clear my lungs?
I have been diagnosed with brochiectasis this last year. Last month my pulmonologist has given me the option of trying Brinsupri and I am waiting to have it all processed and sent as there are several steps for insurance approval, etc., etc. Meanwhile, as I am medicine adverse, I am questioning whether to take it or not even though I have said yes and the process has begun.
Rare risks are skin cancer, gingavitus, etc. I had a squamos cell carcinoma removed from my lip this last September.
It seems some of you who have started brinsupri are coughing and have more pronounced symptoms. Mine are just on the CT scan and shortness of breath.
Any opinions will be welcomed.
Thank you.
Mary

I'm about to start on this drug, and am very interested in the feedback.