Brinsupri experience after 3+ months

@ja24
I’m new to Brinsurpi , just started a few days ago. I’ve had
Bronchiectasis since early childhood. I was formally diagnosed at the age of 30. Was told my whole childhood I had chronic bronchitis. At 31 I had my first CT scan, which was then discovered most of the Bronchiectasis was localized in my lower left lobe. I had surgery that part of my lung was removed. The surgery was successful and helping sputum production. In a nutshell, I still have flareups and sickness is just the way of life so though I am new to this medication and I’m excited about it. I’m also very scared of side effects and cautious.
I am thankful to be able to read everyone’s stories. This is the first time I’ve actually feel like there’s some support with this condition.

Thank you for starting this thread for those of us on BRINSUPRI 3+ months or more!
I started on October 1, 2025 and am into the 4th month. After just 1 week I was calling it the miracle drug. All the positive feedback I have read about on this site I have experienced as well. HOWEVER, at the 5 week mark I became aware of a couple of little red dots on my legs as well as dry patches on my skin. Since then I’ve developed extremely dry peeling skin as well as a horrible skin rash across my trunk. The red dots turn into painful itchy sores leaving me feeling as if my skin is crawling… I have read skin issues can be a side effect of BRINSUPRI, but nowhere can I find how long this may last (forever?), how to treat this condition (yes, I have tried everything including Benadryl, oatmeal baths, prescription lotions!). I am on the 25mg dosage and wonder if I should cut it in half, or temporarily stop BRINSUPRI altogether… Has anyone else experienced these issues? If so, how have you managed them?

I am 77, with bronchiectasis caused by primary ciliary dyskinesia. I have colonized Achromobacter which is multi-drug resistant. I started 10 mg Brinsupri on October 10 and stopped a month later. Within a couple weeks on the drug I noticed that my sputum was thicker and got stuck in my throat, which was scary. My cough changed to a loud deep rumble and my ears plugged up. The cough started a few days after I started Brinsupri and ended a few days after I stopped. I also noticed more drainage from my sinuses. I would wake up with so much mucus in my throat I would have to pull it out.

By November 6 I was feeling like I might be developing an exacerbation, then on the evening of November 7 I suddenly developed a scratchy throat, chills, aches, and low grade fever. On November 9 I started taking oral antibiotics and on November 12 I went to the ED because my oxygen saturation was 90% seated/80% walking. My chest x-ray showed infection and I tested positive for parainfluenza. I was admitted to the hospital to start IV antibiotics, and while there I had several episodes of coughing up large globs of mucus that got stuck in my throat and cut off my air, which was terrifying. Actually I was only able to get one of the plugs out and it was very firm and gelatinous. The CT scan showed significant mucus plugging and there were actually puddles of mucus in some of the airways. I was discharged on home IV antibiotics for two weeks.

I recovered quickly from the exacerbation on the IV antibiotic, but the effects of the parainfluenza lasted for months, particularly my voice. However, since July I have been hospitalized three times for breathing issues, which is a new experience for me. I feel that I can no longer plan life events ahead of time because my bronchiectasis seems to be getting worse.

I know that respiratory infections are listed as a side effect of Brinsupri, but the thickened mucus plugs and my deep cough experience may not be typical. I assumed that Brinsupri caused the mucus plugs, but if they were already there and were mobilized, that might be a good thing if I could cough them out without suffocating first. I do all of the recommended pulmonary hygiene two to three times per day and I exercise. I am considering whether to talk to my doctor about restartng Brinsupri because my quality of life is declining and we are running out of ideas for other therapies.

Any input from others with a similar experience would be appreciated.

I am 77, with bronchiectasis caused by primary ciliary dyskinesia. I have colonized Achromobacter which is multi-drug resistant. I started 10 mg Brinsupri on October 10 and stopped a month later. Within a couple weeks on the drug I noticed that my sputum was thicker and got stuck in my throat, which was scary. My cough changed to a loud deep rumble and my ears plugged up. The cough started a few days after I started Brinsupri and ended a few days after I stopped. I also noticed more drainage from my sinuses. I would wake up with so much mucus in my throat I would have to pull it out.

By November 6 I was feeling like I might be developing an exacerbation, then on the evening of November 7 I suddenly developed a scratchy throat, chills, aches, and low grade fever. On November 9 I started taking oral antibiotics and on November 12 I went to the ED because my oxygen saturation was 90% seated/80% walking. My chest x-ray showed infection and I tested positive for parainfluenza. I was admitted to the hospital to start IV antibiotics, and while there I had several episodes of coughing up large globs of mucus that got stuck in my throat and cut off my air, which was terrifying. Actually I was only able to get one of the plugs out and it was very firm and gelatinous. The CT scan showed significant mucus plugging and there were actually puddles of mucus in some of the airways. I was discharged on home IV antibiotics for two weeks.

I recovered quickly from the exacerbation on the IV antibiotic, but the effects of the parainfluenza lasted for months, particularly my voice. However, since July I have been hospitalized three times for breathing issues, which is a new experience for me. I feel that I can no longer plan life events ahead of time because my bronchiectasis seems to be getting worse.

I know that respiratory infections are listed as a side effect of Brinsupri, but the thickened mucus plugs and my deep cough experience may not be typical. I assumed that Brinsupri caused the mucus plugs, but if they were already there and were mobilized, that might be a good thing if I could cough them out without suffocating first. I do all of the recommended pulmonary hygiene two to three times per day and I exercise. I am considering whether to talk to my doctor about restartng Brinsupri because my quality of life is declining and we are running out of ideas for other therapies.

Any input from others with a similar experience would be appreciated.

I am 76, have been on Brinsupri since October. I had struggled with pseudomonas and was very discouraged. Since starting Brinsupri my mucus has thinned significantly. Had one minor infection which cleared up with antibiotics. I also nebulize with Colistimethate. My last CT scan and spirometer tests both showed no progression. The constant fatigue from non-stop coughing and infections are gone. I still cough but nowhere near as much. I do have a large mole that gets very dry and has peeled. I see a dermatologist every year. I am thankful for this drug. Wish it worked for everyone with bronchiectasis

@mimmzy Glad you are pleased after nearly eight months on Brinsupri.
When you say: "mucus has thinned significantly". I take it it was thick and sticky before?
You said: " Had one minor infection which cleared up with antibiotics."
" What type of infection cleared up with what antibiotics?
Was it a respiratory infection?
Were you referring to a MAC infection regarding "non-stop infections?
Your not coughing as much and less fatigue is great!
Barbara