Brinsupri experience after 3+ months

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?

@whitemarsh Hi. sorry to hear about your skin problems. I've not started on the medication yet but have has numerous squamous skin cancers--some requiring surgery so interested in all the posts. Have you discussed this reaction with your doctor? Also, are you on the lower dosage? Perhaps you could take a break off the Brinsupri and see if your skin conditions show improvement. Good luck.

I’ve finished 14 weeks on Brinsupri. Though I’ve posted much of this elsewhere, I’ll post it here as well. My energy increased early on and continues to be good. Mild hemoptysis was frequent (every one to two months) for me and has disappeared. Pulmonary function tests improved- no CT yet. Sputum is reduced, thicker and harder to expel. It is less watery and more plug-like, but not worrisome in color.

For a bit of context, I was treated successfully for MAC in 2020-2021. Since then I’ve been on antibiotics about once a year and had just finished a round before starting brinsupri. I wonder if my success with brinsupri is related to the antibiotic.

I really haven’t had negative side effects to date. It is good to hear others’ experiences to be aware of what to watch for.

Hi! I’m so glad so many of you are having a positive experience on Brinsupri. As for me I was having peeling skin and small callous like bumps within 3 weeks starting Brinsupri in late September. My doctor took me off Brinsupri in mid October until my skin cleared up and was considering putting me on a lower dose. Once off the medication all started to clear up slowly over time except for one callous, scaly bump half the size of a dime. I waited and thought it would go away. My pulmonologist at Mayo offered to refer me to see a dermatologist. A biopsy was taken and the result was squamous cell carcinoma. I am having mohs surgery next Monday. I am sharing this with all of you so that you watch your skin and get it checked if something doesn’t go away in a normal amount of time. Good luck to all of you who can tolerate this promising new drug.

Thank you Scoop. It is unfortunate that I had this reaction and I must add that I’m very sensitive to medications, perfumes and cannot put eye creams anywhere near my eyes. I use only fragrance free products. I’m totally fragrance free 🙂
And yes, I have fair skin. So I would most likely be that very small percentage of people that have a serious skin reaction. The reason I said it was unfortunate is because I did start feeling a positive change; lighter sputum, less coughing and a little more energetic. I’m hoping Brinsupri works well for others with BE, but wanted to put out a warning for anyone else who mught have the same experience. Thanks again for your reply.

@lindabreathless Are you planning to discontinue Brinsupri?