Brinsupri experience after 3+ months

@melinda561 from what I understand the majority of people with papillion lebevre begin showing signs of the disease before age 5-7 years old. So if you havent had problems in past, most likely you do not have this genetic disorder. But it does not mean you cannot have skin or dental side effects - there’s a slight possibility. It is still prudent to have regular dermatology & dental exams - at least yearly, or if you have issues with skin or dental. I see my dentist every 6 months for cleaning & exam & dermatologist yearly. It’s important to educate your drs about brinsupri & side effects. Printing out a one page brinsupri information sheet from insmed website for your doctors is advise- able.

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!

@clynnp Sorry to read you've had such a difficult time. One thing that helped me with rashes from abx was to take an antihistamine with the abx. Terrible you can't tolerate levaquin, as it's such a potent drug for pneumonia. Regarding the Brinsupri, from what I understand your skin/hair abnormalities will resolve but it will take time. Godspeed!

@scoop Thank you!