Brinsupri experience after 3+ months

@blm1007blm1007 - I am glad to hear you seem to be doing fairly well. The main reason they started me on the Brinsupri was because I was having multiple exacerbations. The Brinsupri reduces the overreaction of the enzymes that are released from the neutrophils. This in turn reduces inflammation which helps limit the number of damaging exacerbations. If you get to the point of experiencing this issue, Brinsupri might be something that could help you. I wish you the best of luck in your journey. Jeannie

@ja24 I pray you keep doing better. I am almost fighting like you with the same exact bacteria psuedanoma aerigenosa is my demon for now. I also had upper left lobe cancer which was resected . Had a battle Jan Feb this year on IV cefepime 2 weeks but my nuetrophils dropped very low and white count 3.72. I have no symptoms of imflammatory at this moment . Scared to go on brinsupri due to I seemingly get sideceffects to everything. And nuetrophils are low so brinsupri is suppose to do something to the nuetrophils enzymes. Im afraid to try it. Any advise . Or thoughts on this. Minn. Mayo seems more on top of follow through with patients. I feel mine do not explain what this PA was to me . Had no idea of this. I am recently experiencing extreme fatigue tiredness . Exercise intolerance and light headed ess.

@smc17 - I am sorry to hear you have been having such a difficult time - sounds like you have been through a lot. The Brinsupri does reduce the enzymes released by the neutrophils to help with the inflammation but in your case it sounds like yours are already very low. I would definitely talk with your pulmonologist to determine whether this medicine is even necessary in your case. For me the results have been very good. I am much more active now and my energy has returned to almost normal levels. Normally I have a lot of adverse reactions to medication but not with the Brinsupri. My pulmonologist at Mayo has been keeping me on the inhaled Colistimethate to fight the pseudomonas (he thinks it has colonized). For the most part it seems to be keeping it at bay. I pray your journey with this battle gets easier and that you can obtain a better quality of life. Jeannie

@ja24 Has it helped with the Pseudomonas infections?

From my understanding, the Brinsupri has no effect on the pseudomonas itself. I am on the Brinsupri to address the Bronchiectasis inflammation. The inhaled antibiotic Colistimethate is what I am using to address the pseudomonas.

One patient in the Phase III trial was on a support group meeting and said that it helped her to have less pseudomonas issues. From what I understood it did not treat an active infection but helped to keep her infection free.

I've been on Brinsupri for 3 months and it's been life changing for me. Coughing and mucus have been significantly reduced! I also haven't had a lung infection since starting it.
Zero side effects thus far.
So grateful for this medicine.

I am replying because of the dry skin and patches of red spots. I have only been on Brinsupri for 8 weeks, but this happened on my legs and arms out of nowhere. I did make an appointment with the dermatologist, and he was not concerned about the appearance of the spots, but it has drastically changed the way I feel about taking the medicine. I am on the 25mg dose and questioned my pulmonologist, and he is so for this medicine that the reply is that there is no other treatment. I get that, but people have lived with this before the pill. Just need to stay in contact with others trying this route and having the same side effects.

@kwalkerz My pulmonologist (a Bronchiectasis expert) is conservative about recommending Brinsupri so far, and only tries it on those who have had 3 or more exacerbations in a year. She participated in the clinical trials, and is following the current reporting carefully, but is not certain every person needs to use it.

There is a lower, 10mg, dose. The last clinical trial showed it to be equally effective in preventing exacerbations. ( https://www.webmd.com/lung/brinsupri-bronchiectasisMaybe you can ask to switch to it?) Maybe you can aske your pulmonologist to try it?

So far, are you seeing any positive changes?

@chilla I am in your camp. I am now pinching myself to see if this isn't a dream. I have battled bronchiectasis for ten years. I did everything in my power to change the course of my battle with constant coughing, 150cc of sputum per day, and basically curtailing my social life out of fear of acquiring a new infection.

I started on Brinsupri November 1, 2025. I have not had an infection since then. First month felt a bit of flulike symptoms but other than that no side effects. My mucous production is now around 15 to 30cc. Two years ago I would cough and spit every block on my five mile walk. Now I can walk cough free. I can sleep without waking up to coughing jags lasting an hour.

I am now contemplating traveling again. Life changing.

I actually wish there was a study to see why some of us are responding so well and others are not experiencing any benefit or side effects to the point they want to stop taking the medication. I will say I have never tested positive for pseudomonas or the NTM bacterias. I have had every other one though so it has been a challenge.

I am due for a repeat CT Scan soon and that will be objective evidence IMO.

I am happy for you @chilla and as grateful. Let us hope for others struggling to see such results too.