I started taking Brinsupri 25mg on October 1, 2025. I have bronchiectasis with MAC. At the time, I was being treated for pneumonia/infection. I had been diagnosed with the pneumonia in June 2025, and it had never cleared. I was back to the ER in September and twice in November. I don't think the antibiotics that were prescribed were right - included a lot of Doxycycline, with Augmentin added in September. I can't tolerate Levaquin. In November, I was prescribed two rounds of Azithromycin and Augmentin. Although I felt extra sick and developed a bad rash from the Azithromycin, it helped. Early this month, I developed acute bronchitis and was prescribed prednisone 40 mg for 5 days, and am now on Augmentin for 14 days. My last CT was 1/8, and the infection has still not cleared in my lower left lobe.

During all of this, I continued taking the Brinsupri. I have developed a lot of skin problems. I feel like I have been living in a dehydrator machine. The worst of it started in my 3rd month of taking the medicine. My lips have been terribly chapped, and my skin is very dry. I have developed hyperkeratosis on the soles of my feet and palms of my hands. The soles of my feet and palms of my hands burn and itch constantly. I also developed two odd looking sores that didn't heal, one on each leg. My pre-cancers on my hands were treated in November 2025, and they already need to be treated again. Last week, the dermatologist froze the leg sores, prescribed a super-strength corticosteroid to use for 2 weeks on the soles of my feet and palms of my hands, and scheduled PDT blue light treatment for the top of my hands.

I have also lost a considerable amount of hair. I noticed that it was getting dry and brittle on the ends, and then it just started falling out. I see my hair stylist every month, and she confirmed that my hair is much thinner. I can't style it as usual, so am just pulling it back in a banana clip.

I don't think I've developed any dental issues, but am scheduled to see the dentist in February. I also have bloodwork scheduled in February to check liver enzymes.

The positive things noted while on Brinsupri: My sputum was thinner, I had fewer coughing attacks (except for the recent bronchitis episode), I was sleeping better and I have not had hemoptysis since mid-November.

I met with my pulmonologist this week on Wednesday. I have decided to stop the Brinsupri for now, hoping my skin and hair problems resolve. If I do resume use, it will be at the 10 mg dose. I am concerned about side effects from stopping the drug. Hopefully, those will be minimal.

I hope that most of you don't experience these difficult side effects, as they are supposed to be rare. Good luck to all!