Brinsupri experience after 3+ months

I have MAC disease on Arikayce 6 months and doing better inder direction of an Infectious Disease Dr.]. Pulmonologist also following since diagnosis of lung fibrosis/bronchiectasis put me on Brinsupri. After one month I had roseasea on cheeks, excema in area near mouth, and a blister on arm dermatologist thought might be skin cancer. I took myself off the med completely and the last problem has gone away but the two on the face are still present after two month off. I would not advise anyone to take it. The FDA approval was based on a very small pool of people.

@patti55 You have a smart doctor. My pulmonologist, who is frequently involved in clinical trials, told me she read ALL of the test reports/research results. According to her, it appears from the clinical trials that 10mg is as effective for most people as the 25mg, but with fewer side effects.
She has only prescribed for a handful of patients (not me) who were having 5 or more exacerbations per year. When I see her in May, we are reserving part of the appointment to talk about how Brinsupri seems to be working in the real world. She is a strong supporter of Mayo Connect and wants to hear how our members are doing and share how her patients are responding.

@sueinmn interesting to hear that your pulmonologist also said that the 10 mg dose showed almost as much benefits. That is what my Stanford md said as well. It makes me feel not as bad that my body does not seem to tolerate the 25 mg. Thank you so much for posting that, it makes me not as disappointed that I can’t take the higher dose.

@luxembourg I’m so sorry for your experience . I am starting month
# 6 , 10mg tomorrow , and I’m not having side effects. Only insomnia if I take it at night . I’ve seen a significant improvement in my symptoms . Most importantly , the only lung flare I’ve had was easier to treat . Also, my monthly blood work has all been good. I would definitely recommend it.

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?