Brinsupri experience after 3+ months

Posted by scoop @scoop, Jan 2 10:34am

Brinsupri may take 3–6 months to reach full effect.
Please use this thread to share first-hand experiences only if you have been on Brinsupri for 3 months or longer.

To keep this discussion useful and focused, let’s limit comments to actual outcomes, side effects, or changes you’ve observed after at least 3 months of use.

General questions, early impressions (< 3 months), speculation, or unrelated discussions please post in a separate thread.

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

HERE WE GO MY FELLOW BRINSUPRI FRIENDS! THIS WAS A BIG HOPE OF MINE! Is Brinsupri changing our lungs for the better aside from just helping us ward off exacerbations.
https://finance.yahoo.com/healthcare/articles/embarc-announces-intention-collaborate-insmed-090500055.html
Hannover, Germany, June 25, 2026 – The European Multicentre Bronchiectasis Audit and Research Collaboration (EMBARC), the leading pan-European research network dedicated to advancing the understanding and treatment of bronchiectasis, announced today at the World Bronchiectasis Conference (WBC 2026), its intention to collaborate with Insmed Incorporated to evaluate brensocatib 25 mg – an oral, reversible inhibitor of dipeptidyl peptidase-1 (DPP-1) – over three years in an open-label, single-arm, interventional study enrolling up to 3,000 patients with bronchiectasis across the United Kingdom, Spain, Germany, Belgium, France, and Italy.

The study will be designed to deepen understanding of the long-term use of brensocatib and whether it has the potential to modify the course of the disease. This research would expand upon the current evidence that demonstrated brensocatib slows lung function decline, a measure used to indicate slower disease progression. The intended study will also evaluate whether earlier, upstream use of the therapy is effective in further slowing the progression of bronchiectasis, with a plan to include well-validated endpoints, along with some novel composite endpoints.

"Building on ASPEN trial data showing that brensocatib 25 mg reduced exacerbation frequency, slowed lung function decline, and produced structural changes in the airways, this study through the EMBARC network will allow us to ask an even more ambitious question: whether intervening earlier in the disease course can do more than slow progression, but fundamentally alter its trajectory," said lead study investigator James Chalmers, MBChB, Ph.D., Rhodes Chair of Experimental Therapeutics and Respiratory Physician, University of Oxford. "Over a three-year horizon, we have a real opportunity to understand whether earlier use of brensocatib can not only reduce the burden of exacerbations and slow disease progression, but even more profoundly, change the natural course of the disease. That is the question at the heart of this study, and the answer could help shape how we treat bronchiectasis in the future."

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Profile picture for Sue, Volunteer Mentor @sueinmn

@cholash If you are doing all of that with no improvement, you may be one about 1/3 of people not helped by Brinsupri. Only you can decide if you want to give 25mg a try.

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@sueinmn thank you . Yes, I’ve thought this very thing. The brinsupri has definitely cut back on the amount of mucus, I’m just not sure it’s translating to the less exasperation part . I’m also waiting on a new culture , at the same time wondering if the MAC numbers have changed . Wish this could all be more definitive .

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I have been on Brinsupri for 4 months. It has been a miracle drug for me, no more coughing! I did experience mild hair loss but this has since slowed way down, and was the only side effect. I did have cotton mouth for the first week but immediately upped my fluid intake and did not have a problem after that. I took the cotton mouth as a positive sign of drying up all the mucus and gunk in my lungs. I may have a bad coughing day but no flare ups or heavy coughing spells since being on this drug. I sure hope to be able to continue on this wonderful drug. I have had mild dry skin but no worse than before, I have not had headaches or dental problems. I am hoping the copay on this drug will decrease …$$111 per month is a little steep for someone on social security. Thoughts?
I only wish they had this drug sooner as I have had BX for over 25 years.

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Profile picture for lunglady @lunglady

I have been on Brinsupri for 4 months. It has been a miracle drug for me, no more coughing! I did experience mild hair loss but this has since slowed way down, and was the only side effect. I did have cotton mouth for the first week but immediately upped my fluid intake and did not have a problem after that. I took the cotton mouth as a positive sign of drying up all the mucus and gunk in my lungs. I may have a bad coughing day but no flare ups or heavy coughing spells since being on this drug. I sure hope to be able to continue on this wonderful drug. I have had mild dry skin but no worse than before, I have not had headaches or dental problems. I am hoping the copay on this drug will decrease …$$111 per month is a little steep for someone on social security. Thoughts?
I only wish they had this drug sooner as I have had BX for over 25 years.

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@lunglady
Please have your Doctor file the paper work through Panther Pharmacy. There is a program where you only pay $10 per month.

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Profile picture for sallyb827 @sallyb827

@lunglady
Please have your Doctor file the paper work through Panther Pharmacy. There is a program where you only pay $10 per month.

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@sallyb827
Wow and thank you so much!

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Profile picture for lunglady @lunglady

I have been on Brinsupri for 4 months. It has been a miracle drug for me, no more coughing! I did experience mild hair loss but this has since slowed way down, and was the only side effect. I did have cotton mouth for the first week but immediately upped my fluid intake and did not have a problem after that. I took the cotton mouth as a positive sign of drying up all the mucus and gunk in my lungs. I may have a bad coughing day but no flare ups or heavy coughing spells since being on this drug. I sure hope to be able to continue on this wonderful drug. I have had mild dry skin but no worse than before, I have not had headaches or dental problems. I am hoping the copay on this drug will decrease …$$111 per month is a little steep for someone on social security. Thoughts?
I only wish they had this drug sooner as I have had BX for over 25 years.

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@lunglady I go through Panther RX and my copay is 100% paid by "The Assistance Fund". I can't recall if it was INSMED or Panther that initiated the paperwork. They do ask about income, but it's fairly lenient.

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Thank so much for the info! I appreciate it

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Profile picture for lunglady @lunglady

I have been on Brinsupri for 4 months. It has been a miracle drug for me, no more coughing! I did experience mild hair loss but this has since slowed way down, and was the only side effect. I did have cotton mouth for the first week but immediately upped my fluid intake and did not have a problem after that. I took the cotton mouth as a positive sign of drying up all the mucus and gunk in my lungs. I may have a bad coughing day but no flare ups or heavy coughing spells since being on this drug. I sure hope to be able to continue on this wonderful drug. I have had mild dry skin but no worse than before, I have not had headaches or dental problems. I am hoping the copay on this drug will decrease …$$111 per month is a little steep for someone on social security. Thoughts?
I only wish they had this drug sooner as I have had BX for over 25 years.

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@lunglady I am going through insmed and they arranged payment through The Assistance Fund . Between humana and TAF, I have zero copay. I have been on brinsupri 10 months.

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Profile picture for crepass @crepass

@lunglady I am going through insmed and they arranged payment through The Assistance Fund . Between humana and TAF, I have zero copay. I have been on brinsupri 10 months.

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@crepass Thanks for the info!

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Profile picture for crepass @crepass

@lunglady I am going through insmed and they arranged payment through The Assistance Fund . Between humana and TAF, I have zero copay. I have been on brinsupri 10 months.

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@crepass Ten months is a long time compared to most of us. Have you noticed improvement in stages? I started feeling better at 1-2 months and now noticing more improvement at 3.5-4 months. I heard maximum approvement is at 5 or 6 months. Curious about your experience.

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