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?

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Profile picture for faymk @faymk

I have been on brinsupri for 2 1/2 months. I had such high hopes for this new medicine but unfortunately I think I need to stop taking it. My cough has gotten so much worse and a lot of wheezing going on. A month ago my doctor had me take a round of prednisone because of the wheezing. I’ve been coughing up more phlegm but it’s usually during the night, which is a nuisance. Is there anyone else out there who has had similar results? I also do Ohtuvahre and the levabuteral/ saline with a nebulizer twice a day.

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@faymk Wheezing sounds like asthma, though I have asthma, I rarely wheeze but asthma can get me coughing ALL day long and for months. I take both Brinsupri and recently restarted Montelukast-though it doesn't work for many. For me leukotrienes were always an issue, particularly in the spring and fall. I started Brinsupri 3 months ago and I started noticing an improvement at about 4 weeks. That's not really that unusual and I believe it has to do with the extent that neutrophil enzymes impact one or another. Unfortunately, I'm now getting skin issues. Panther RX pharmacists are hearing that many are seeing effects within the 1-2 month timeframe, but not everyone. I think it's worth a call to INSMED, who continue to collect data from many of us (and their pharmacy partner, Panther RX). I would think by now they would have a good handle on how many start feeling improvement within 1.2, or 3 months and up through 6 months.

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Profile picture for kathyjjb @kathyjjb

@faymk Wheezing sounds like asthma, though I have asthma, I rarely wheeze but asthma can get me coughing ALL day long and for months. I take both Brinsupri and recently restarted Montelukast-though it doesn't work for many. For me leukotrienes were always an issue, particularly in the spring and fall. I started Brinsupri 3 months ago and I started noticing an improvement at about 4 weeks. That's not really that unusual and I believe it has to do with the extent that neutrophil enzymes impact one or another. Unfortunately, I'm now getting skin issues. Panther RX pharmacists are hearing that many are seeing effects within the 1-2 month timeframe, but not everyone. I think it's worth a call to INSMED, who continue to collect data from many of us (and their pharmacy partner, Panther RX). I would think by now they would have a good handle on how many start feeling improvement within 1.2, or 3 months and up through 6 months.

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@kathyjjb What kind of skin issues After 2 months on the medication I have a small but very itchy rash on my forearm.

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Profile picture for softballqueen @softballqueen

@kathyjjb What kind of skin issues After 2 months on the medication I have a small but very itchy rash on my forearm.

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@softballqueen My back is dry and itchy, and I just had a lesion on forehead diagnosed as actinic keratosis. I've never had anything like it before and been always careful about sun exposure.

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