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?

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

scoop | @scoop | May 26 4:49pm

In reply to @softballqueen "@coffcoff Thank you so much for the info. Do you feel that had any impact on..." + (show)

@softballqueen
https://connect.mayoclinic.org/comment/1235758/

coffcoff | @coffcoff | May 26 4:51pm

In reply to @sweethighland "@coffcoff You are so brave. Do you have MAC or other bacteria? May I know who..." + (show)

@sweethighland It's difficult to say if the surgery has improved how I feel, seeing as my cough and fatigue pretty much got better after my NTM infection resolved (temporarily---I have it again) and I regained the weight I'd lost. As I mentioned before, things have improved a lot for me after 6+ months on brensocatib. My CT scan shows improvement, which my doc says doesn't happen much. The most we can expect is for things to stay the same and not deteriorate.

My NJH doctor is David Griffith. He's a frequent presenter at conferences so you may have seen him. Sweet, caring, funny and extremely knowledgeable about NTM and bronchiectasis. Dr Mitchell was also amazing. The surgery lasted about 2-3 hours but I stayed in the hospital for 3 days afterwards.

softballqueen | @softballqueen | May 26 6:36pm

In reply to @coffcoff "@sweethighland It's difficult to say if the surgery has improved how I feel, seeing as my..." + (show)

@coffcoff What are you taking for the NTM this time around? I've had 4 recurrences over 10 years and just finished 18 months of aerolized Arikayce.

coffcoff | @coffcoff | May 26 7:39pm

In reply to @softballqueen "@coffcoff What are you taking for the NTM this time around? I've had 4 recurrences over..." + (show)

@softballqueen Watching and waiting and doing the best airway clearance that is humanly possible.

sweethighland | @sweethighland | May 26 7:55pm

In reply to @coffcoff "@sweethighland It's difficult to say if the surgery has improved how I feel, seeing as my..." + (show)

@coffcoff Thank you very much for your response. I'm glad that Brinsupri is working for you. Let me go back and look at the conferences.

melinda561 | @melinda561 | May 27 6:59am

In reply to @tolepainter "Well I just got hit with that Common Cold, which can be a side effect of..." + (show)

@tolepainter I have been on Brinsupri since January. Recent URI symptoms lasted about 3 weeks which I contracted from granddaughter. It was rough with productive cough, wheezing and congestion. Thankfully, sputum culture did not indicate a need for antibiotics.

tconz | @tconz | May 27 7:21am

In reply to @melinda561 "@tolepainter I have been on Brinsupri since January. Recent URI symptoms lasted about 3 weeks which..." + (show)

@melinda561 When you had a URI did you get on antibiotics or just let it run it's course?

melinda561 | @melinda561 | May 27 8:59am

At request of ID, waited for culture report which indicated per ID that antibiotics were not needed. I was diligent with airway clearance and added an extra 7% saline treatment via Aerobika. It’s such a fine line deciding to go to ED or not especially 10-14 days into significant symptoms. I’m colonized with pseudomonas which is often the culprit in my exacerbations. This time, other than gram positive and gram negative organisms, no pseudomonas was seen.

faymk | @faymk | Jun 1 7:36pm

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.

scoop | @scoop | Jun 1 7:42pm

In reply to @faymk "I have been on brinsupri for 2 1/2 months. I had such high hopes for this..." + (show)

@faymk
Yes, the Bronchiectasis seemed to get a bit more intense before it got better. 6+ months before full benefits are realized. Sometimes it felt like two steps forward and three steps back. A lot of plateaus. Even on Brinsupri over eight months I often wake up in the morning with a cough feeling the need to clear my lungs. How often are you doing airway clearance? My new record is being able to use the nebulizer and clear my lungs in 20 minutes! Previously unheard of.

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