Brinsupri (aka Brensocatib)

Posted by scoop @scoop, Aug 12 10:55am

FDA approved Brensocatib today. Hooray for us. Let’s hope we have access to it as soon as possible and it gives us some measure of relief. Thank you to all the scientists and doctors and patients!
https://www.multivu.com/insmed/9347351-en-fda-approves-brinsupri-brensocatib

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

Here is the NIH report on the study. No mention of losing teeth but I'm sure the person with 6MM pocket depths had to do some serious dental work to try and correct those after leaving the study. Bottom line, make sure your teeth and gums are in good shape before starting this drug.
https://pmc.ncbi.nlm.nih.gov/articles/PMC11184906/

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Profile picture for picartist @picartist

Here is the NIH report on the study. No mention of losing teeth but I'm sure the person with 6MM pocket depths had to do some serious dental work to try and correct those after leaving the study. Bottom line, make sure your teeth and gums are in good shape before starting this drug.
https://pmc.ncbi.nlm.nih.gov/articles/PMC11184906/

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The same as getting baseline tests (eye, hearing) prior to starting the Big 3.

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Profile picture for scoop @scoop

I must have read the same post. Someone commented (and my pulmonologist confirmed) that it may be have been due to Papillon–Lefèvre syndrome (PLS) is a very rare inherited disorder caused by mutations in the CTSC gene.

It is characterized by:
Thickened, scaly skin on the palms and soles (palmoplantar keratoderma)
Severe early-onset gum disease (periodontitis)
Premature loss of both baby and adult teeth
It usually begins in early childhood and is linked to a deficiency of the enzyme cathepsin C (DPP1).

When taking Brinsupri regular dental checks are imperative, every 3-6 months.

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Hi Scoop

Just checked the LM post and the fellow who was losing all his teeth did NOT have PLS apparently. He has posted that he doesn't have that disease....so there may be risks to dental health to consider.

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Profile picture for irenea8 @irenea8

The rare genetic condition creates a deficiency of DPPI and Brensocatib lowers ones DPPI. Logically it would seem that is the cause of those cases along with a likely predisposition to gum disease.

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The fellow said he does not have that disease, so there must be other reasons.

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Profile picture for narelled23 @narelled23

The fellow said he does not have that disease, so there must be other reasons.

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Interesting. Thank you for following up. It would be a service to the community if he said more about his predisposition or lack of predisposition to gum disease and tooth loss. Poor fellow, as if there's not enough already to deal with.

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I started Brinsupri on August 23rd 2025. It arrived one day after making arrangements with Pantherx rare disease pharmacy. I will keep you informed. No side effects expected, but will talk to care rep on Monday. It must be kept in its original container. My insurance will take awhile to approve (Humana), but my pulmonologist was as excited as I am to get started.

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Profile picture for egayle187 @egayle187

I started Brinsupri on August 23rd 2025. It arrived one day after making arrangements with Pantherx rare disease pharmacy. I will keep you informed. No side effects expected, but will talk to care rep on Monday. It must be kept in its original container. My insurance will take awhile to approve (Humana), but my pulmonologist was as excited as I am to get started.

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That’s great news. I’m sure lots of us here will be anxiously awaiting updates now that you are able to start this. Wishing you the best.

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Yes, please keep us posted on how the Brinsupri is going for you! thank you all for these helpful updates as well.

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Profile picture for egayle187 @egayle187

I started Brinsupri on August 23rd 2025. It arrived one day after making arrangements with Pantherx rare disease pharmacy. I will keep you informed. No side effects expected, but will talk to care rep on Monday. It must be kept in its original container. My insurance will take awhile to approve (Humana), but my pulmonologist was as excited as I am to get started.

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Yes, updates will be great to hear! There has been so much speculation and worry about insurance coverage, cost, side effects, etc. Hope to hear some good news soon.

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I may be the luckiest old lady in NE PA. Today, the 26th I received approval from my insurance (Humana) and a call from the manufacturer's rep. They will send a "welcome pack" and call me to check on understanding.
I have had no adverse effects. I'll check in after a week. Hopefully you all will have good luck getting signed up, too.

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