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I just wanted to share with you that after about 12 days on Brinsupri I have become cautiously optimistic.
I have noticed a surprising increase in my energy, less mucus, particularly green mucus. This was very surprising to me because as mentioned by other members, I didn’t expect any results or improvements until 4 to 6 weeks.’
I have cut back on my air clearance, particularly the best Vest because I fell and injured my back and could not cope with putting it on
Also, I missed one day of evening air clearance… surprisingly, I have Not noticed any difference even with the reduction in air clearance
Nevertheless, I have continued to feel much more energetic and strong. I never had much of a cough, but I do believe this could be a very promising drug for most of you.

I have upped my regimen slowly. I’m really fast walking 30 to 40 minutes and now I am able to do a little bit of a jog
This is truly a hopeful experience
Also, the study concluded that there was only a 20% reduction in flares and exacerbations, etc.
That may be the case, but overall, it has been a very positive experience
Minimal side effects Except for some annoying headaches, which disappeared after the first week
PS I’m on the 10 mg dose
I’ve tried it within without food and it doesn’t seem to make a difference although I do take it in the morning
I hope all of you have the opportunity too. Try this very promising medication.
It’s worth the hassle of getting it.
I’m terrified that this will change because really I haven’t felt this good in two years since I was first diagnosed with chronic pneumonia with abscess, etc.
Best regards to all Jill Crawford

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Replies to "I just wanted to share with you that after about 12 days on Brinsupri I have..."

I am not yet sure it is a yearly fee. I am no expert on insurance, but I was hopeful that maybe it was a one time fee. I probably won't know for sure until we get to the first of the year. It may also come under my annual out of pocket which maxes at $2,000 I think. I might also add that the people at inLighten, which is supposed to provide patient support on all this have been useless.

BRINSUPRI was proven to reduce lung function decline
Studies have shown that lung function naturally declines over time for everyone, but people with bronchiectasis experience greater decline. In the ASPEN study, BRINSUPRI 25 mg was shown to help reduce lung function decline when compared to placebo.
Reduction in lung function decline chart
Post-bronchodilator FEV1, a common test that determines how well your lungs are working, was measured at 1 year in the ASPEN study. People taking placebo saw a decline of 62 mL compared with 50 mL for those taking BRINSUPRI 10 mg. The difference in FEV1 between the 10-mg dose and placebo was not significant.
People taking BRINSUPRI 25 mg saw a decline of 24 mL, which was a 61% reduction in lung function decline when compared to a 62-mL decline for those taking placebo.

GREAT NEWS

BRINSUPRI
Attention all this is GREAT NEWS
I REMAIN VERY HOPEFUL THAT THE LUNGS WILL CHANGE STRUCTURALLY AS THE STUDY SUGGEST. I WILL ASK MY PULMO ABOUT GETTING ON THE 25 MG. I AM ON 10 NOW.

BRINSUPRI was proven to reduce lung function decline
Studies have shown that lung function naturally declines over time for everyone, but people with bronchiectasis experience greater decline. In the ASPEN study, BRINSUPRI 25 mg was shown to help reduce lung function decline when compared to placebo.
Reduction in lung function decline chart
Post-bronchodilator FEV1, a common test that determines how well your lungs are working, was measured at 1 year in the ASPEN study. People taking placebo saw a decline of 62 mL compared with 50 mL for those taking BRINSUPRI 10 mg. The difference in FEV1 between the 10-mg dose and placebo was not significant.
People taking BRINSUPRI 25 mg saw a decline of 24 mL, which was a 61% reduction in lung function decline when compared to a 62-mL decline for those taking placebo.

https://www.brinsupri.com/brinsupri-study-results/
This is the link to the study results
Jill

https://www.brinsupri.com/brinsupri-study-results/
Post-bronchodilator FEV1, a common test that determines how well your lungs are working, was measured at 1 year in the ASPEN study. People taking placebo saw a decline of 62 mL compared with 50 mL for those taking BRINSUPRI 10 mg. The difference in FEV1 between the 10-mg dose and placebo was not significant.
People taking BRINSUPRI 25 mg saw a decline of 24 mL, which was a 61% reduction in lung function decline when compared to a 62-mL decline for those taking placebo.

Post-bronchodilator FEV1, a common test that determines how well your lungs are working, was measured at 1 year in the ASPEN study. People taking placebo saw a decline of 62 mL compared with 50 mL for those taking BRINSUPRI 10 mg. The difference in FEV1 between the 10-mg dose and placebo was not significant.
People taking BRINSUPRI 25 mg saw a decline of 24 mL, which was a 61% reduction in lung function decline when compared to a 62-mL decline for those taking placebo.

These positive reports are very encouraging. I am hoping that this will cause Medicare to take another look and add Brinsupri to the 2026 formulary. I learned two days ago that it is still classified as “non-formulary”. I am on a State Medicare Advantage plan for retirees. Meanwhile, I do have an rx for the med obtained through advocacy from my pulmonologist and I intend to start it today. I have spent considerable time researching this med for side effects and its availability in 2026. Keeping my fingers crossed. I will probably take it at lunch time to keep a distance from the meds I take first thing in the morning.

I was searching for updates on Brinsupri on line and saw “….on October 16, 2025, the Committee for Medicinal Products (CHMP) adopted a positive opinion, recommending the granting of a marketing authorization for the medicinal product Brinsupri”. It was reviewed under the EMA’s accelerated assessment program and in Europe is available in the 25 mg dose. EMA is the European Medicines Agency.

I think we are all in the same boat about which Part D to pick. There will probably be more information for year 2027 enrollment.

There is a group that rates the cost vs benefit of new drugs, and brensocatib did not get a good score due to the cost. That makes we wonder if insurance companies will look at that and not add to their formulary.