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!

I am on fifth month of brinsupri-
- very dried out
- barely any mucus
- blood pressure up( but still fine, from 115 before to 125/127 now)
- started having headaches( very rare before)

wondering when people start to experience any gradual benefits from Brinsupri. Surely they do not come all at once. Did you find the very gradual improvement start after a few months or as early as a month?

It’s hard to say. Positive I have not been sick but on the other hand I am fully vaccinated and avoid crowds . I still cough but differently since I have been on brinsupri- before it was dry now I sound as a person who smokes- deeper cough. I don’t know what it means. I am going to NJ next month and will see. Otherwise I did not notice any improvement so far. I thought I would cough less but no

@irenea8 If you read through this thread and others related to Brinsupri (which I encourage you to do) you'll find that everyone is different, experiencing subtle differences after 2 weeks to significant symptom relief after 4+ months, and a lot of points in-between. Even without the drug people with BE produce different amounts of sputum everyday. No 2 days are alike. Remember, Brinsupri takes up to 6 months to "work". Hope it does for you!

I read that Brinsupri infections are a listed side effect of Brinsupri. This worries me since I am testing positive again for MABC. So far, the counts are pretty low but have developed a chronic cough in the past 2 months. I'm not sure if I would benefit that much from it, my PFT's are fairly stable. Has anyone seen any information on whether or not taking the drug would reduce antibodies used to attack the NTMs? I know macrophages are significant in the defense of NTMs, but I would think neutrophils also play a role.

@kathyjjb For clarity, clinical trial data identified upper respiratory infections (URIs) as a potential side effect of Brinsupri, rather than lower respiratory infections.

Have you listened to the latest summary on treatments for NTM and BE? I found it informative.
https://connect.mayoclinic.org/discussion/resources-for-the-abcs-on-bronchiectasis-and-mac-ntm/