Brinsupri follow-up

Posted by scoop @scoop, Sep 29, 2025

It seems a bunch of us have started Brinsupri. Let's use this thread for discussion. If you are taking Brinsupri have you noticed anything different, including changes to bronchiectasis or side effects? How long have you been on it?

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Profile picture for wheresjohnny25 @wheresjohnny25

I had such a draining experience with inLighten, but if there’s one silver lining, it’s that I realized we don't actually need their program at all. Honestly, your doctor can just send your prescription straight to the specialty pharmacy—that’s where the real magic happens anyway.

It feels like inLighten is just a middleman pretending to help, but if you look at the comments here, they’re mostly just pointing you toward pharmacies like Panther. Save yourself the headache and the endless weeks of phone tag. Just remember: these manufacturers only want to sit in the middle so they can own your data. Skip the middleman and keep things simple.

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@wheresjohnny25, good to hear that you were able to get your prescription directly through the specialty pharmacy.

I see you are new to the group. Welcome.
Are you tolerating Brinsupri (brensocatib) well?

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My doctor wants me to consider going on Brinsupri. I’m interested in hearing from those who experienced side effects- gum and teeth problems, skin thickening, hair loss, blood pressure issues…. Thank you

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Profile picture for cindip @cindip

My doctor wants me to consider going on Brinsupri. I’m interested in hearing from those who experienced side effects- gum and teeth problems, skin thickening, hair loss, blood pressure issues…. Thank you

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@cindip Here's a link to another thread for those who have been on Brinsupri for over 3 months. Keep in mind that it takes a full 6 months to realize the benefits of Brinsupri. So far I have not experienced any of the symptoms you list above and have been on it for 6+ months. I go for more frequent skin checks as I've had a lot of cumulative lifetime sun and have had issues over the years. Working my way up to 6 months I experienced many different plateaus. Things seemed to change from week to week. Now that I reached 6 months it seems things have stabilized. Good luck!
https://connect.mayoclinic.org/discussion/brinsupri-experience-after-3-months/

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Profile picture for scoop @scoop

@cindip Here's a link to another thread for those who have been on Brinsupri for over 3 months. Keep in mind that it takes a full 6 months to realize the benefits of Brinsupri. So far I have not experienced any of the symptoms you list above and have been on it for 6+ months. I go for more frequent skin checks as I've had a lot of cumulative lifetime sun and have had issues over the years. Working my way up to 6 months I experienced many different plateaus. Things seemed to change from week to week. Now that I reached 6 months it seems things have stabilized. Good luck!
https://connect.mayoclinic.org/discussion/brinsupri-experience-after-3-months/

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@scoop
Yes, you are so right about the different plateaus! I have noticed the same thing and it does take time for the benefits to show themselves fully.

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Has anyone noticed an increase in coughing after starting brinsupri? I started it two weeks ago and I am coughing more frequently now (dry cough). I am taking the 25 mg.

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Profile picture for positivethinking @positivethinking

Has anyone noticed an increase in coughing after starting brinsupri? I started it two weeks ago and I am coughing more frequently now (dry cough). I am taking the 25 mg.

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@positivethinking Yes, that happened to me. For more information please read through https://connect.mayoclinic.org/discussion/brinsupri-experience-after-3-months/

Brinsupri requires a full 6 months for stabilization, at least in me and several others. My pulmonologist warned me about this timing also.

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I've been using 10 mg. Brinsupri since Sept. 2025 and have seen a positive reduction in exacerbations of coughing and mucous with Bronchiectasis. However, I'm noticing hair thinning and hair loss - especially around the top of my head. I don't want to stop Brinsupri but am concerned about this negative side effect. Has anyone else experienced hair thinning and hair loss since taking Brinsupri and is there anything that can be done to mitigate this that is a more natural approach?

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At 4 months, I have experienced a reduction in exasperations. Hang in there.

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Profile picture for phoenixrises @phoenixrises

I've been using 10 mg. Brinsupri since Sept. 2025 and have seen a positive reduction in exacerbations of coughing and mucous with Bronchiectasis. However, I'm noticing hair thinning and hair loss - especially around the top of my head. I don't want to stop Brinsupri but am concerned about this negative side effect. Has anyone else experienced hair thinning and hair loss since taking Brinsupri and is there anything that can be done to mitigate this that is a more natural approach?

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@phoenixrises I have been on Brinsupri for 5 months taking the 25 mg dose. Almost from the beginning I experienced very chapped lips and dry skin on the bottoms of my feet. About four months in I started having blotches of red scaly skin on my eyelids (weird). I started splitting the 25 mg pill in half and the symptoms have improved. I was reluctant to decrease the dose because my energy level had improved a lot with the 25 mg. I’m hoping the lower dose will be sufficient to maintain the improved energy level. I am also losing hair around the crown of my head but hope this will level off. Someone said talk to a dermatologist but I was unaware there is any help for hair loss. Can someone out there please respond with information on that topic?

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Profile picture for maryjanechilds @maryjanechilds

@phoenixrises I have been on Brinsupri for 5 months taking the 25 mg dose. Almost from the beginning I experienced very chapped lips and dry skin on the bottoms of my feet. About four months in I started having blotches of red scaly skin on my eyelids (weird). I started splitting the 25 mg pill in half and the symptoms have improved. I was reluctant to decrease the dose because my energy level had improved a lot with the 25 mg. I’m hoping the lower dose will be sufficient to maintain the improved energy level. I am also losing hair around the crown of my head but hope this will level off. Someone said talk to a dermatologist but I was unaware there is any help for hair loss. Can someone out there please respond with information on that topic?

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@maryjanechilds You may want to talk to your pulmonologist. My docs are "cautiously and selectively prescribing" Brinsupri, and according to them the literature actually reported better results with the 10mg dose. They were surprised so many other docs are using the higher dose.
Maybe you can have the same results on 10mg?

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