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Brinsupri experience after 3+ months

MAC & Bronchiectasis | Last Active: 6 hours ago | Replies (292)

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Profile picture for cholash @cholash

@sueinmn Did your doctor mention why she’s not using the 25mg? I’ve been on 10 mg since last Sept , and currently being treated for my 2nd exacerbation . The UT Tyler Dr ( who was involved with the clinical trials ) said I could try the 25, but I’m nervous to bump it up .

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Replies to "@sueinmn Did your doctor mention why she’s not using the 25mg? I’ve been on 10 mg..."

@cholash She said she is following the initial test results that showed equal effectiveness between doses at managing cough, mucus and exacerbations. And the lower dose has fewer, milder side effects. She said there was some evidence that the higher dose limited progression, but she is waiting for the longer, real world followup reports. At one year she plans to do new CT scans on her Brinsupri patients.

As to your continuing exacerbations, how does it compare to before the Brinsupri? The study results showed a decrease of 21%, so if this is fewer than you had before, by even one flare, the drug is performing as well as it did in the trials. She also stressed that there is a big difference between the limited study population and the people, often with more issues, taking it now.

Have your other symptoms improved? Have you been as diligent with airway clearance and other precautions since you started the med?