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.