Brinsupri experience after 3+ months

I am 76, have been on Brinsupri since October. I had struggled with pseudomonas and was very discouraged. Since starting Brinsupri my mucus has thinned significantly. Had one minor infection which cleared up with antibiotics. I also nebulize with Colistimethate. My last CT scan and spirometer tests both showed no progression. The constant fatigue from non-stop coughing and infections are gone. I still cough but nowhere near as much. I do have a large mole that gets very dry and has peeled. I see a dermatologist every year. I am thankful for this drug. Wish it worked for everyone with bronchiectasis

@blm1007blm1007 yes it was a respiratory infection. My non-stop infections were pseudomonas. Difficulty clearing up the infections.

I am 76, have been on Brinsupri since October. I had struggled with pseudomonas and was very discouraged. Since starting Brinsupri my mucus has thinned significantly. Had one minor infection which cleared up with antibiotics. I also nebulize with Colistimethate. My last CT scan and spirometer tests both showed no progression. The constant fatigue from non-stop coughing and infections are gone. I still cough but nowhere near as much. I do have a large mole that gets very dry and has peeled. I see a dermatologist every year. I am thankful for this drug. Wish it worked for everyone with bronchiectasis

@cherybery
I would be surprised if your Pulmo would recommend restarting Brinsupri after what you experienced. I had to stop after 7 weeks. My mucus had gotten thicker and increased amount before I started Brinsupri but it only got worse and I had the ear plugging feeling and mucus originating in upper airways even more than usual. Also had severe vertigo episodes. And when I took my BP it seemed to jump from high to low. In spite of all this I had considered retrying Brinsupri but my pulmo (who has MANY patients on it) said he was not keen on my doing so. I wish we knew more but it seems a miracle for some and for others quite the opposite.

@mimmzy - I was surprised when I read your comment because it so mirrors my story too. I am 79 and have battled pseudomonas for a couple of years now and my pulmonologist thinks it has colonized. Colistimethate seems to keep it under control most of the time so I nebulize twice daily with airway clearance followed by the Colistimethate. I started 25 mg Brinsupri in February and have seen a definite improvement. I was having multiple Bronchiectasis flares in the last year and was treated with Cefepime via PICC line. Since starting the Brinsupri I have only had one flare and it was treated by oral antibiotics. So far I have not experienced any side effects from the Brinsupri. I also have MAC and was treated with the Big 3 but because it didn’t work, the treatment was stopped. That was three years ago and I have had no significant changes since then. I do sputum samples about every three months and last month my sample came back showing no MAC (that’s the first time that has happened). I am hoping the MAC may be a non-progressor. Best of luck to you with your treatments!

@irenea8
I just finished 3 months of 10 mg Brinsupri. While my cough and mucus have both decreased, I, too, have had uncomfortable bouts of vertigo with vomiting. I called the Panther pharmacist who said she hadn’t heard that as a side effect and it probably had to do with my blood pressure which is no problem. Now my Mayo doctor switched me to 25mg of Brinsupri which I’m thinking of cutting in half. I wonder if anyone else had any issues with vertigo while on it.

@ja24 I am so glad your results are positive. I am on 10 mg of Brinsupri.

@colleenburcar
For me the vertigo episodes have stopped since I went off the Brinsupri. When I did a search on it, Vertigo did come up as a possible slow build allergic type reaction. But it could also be due to BP fluctuations or inner ear plugging both possible from Brinsupri. At any rate for me it was related to Brinsupri as far as I can tell but will never know for sure the exact cause (allergic, BP, ears etc).

Thank you for your prompt response. I’m glad you’re doing better now that you’re off brinsupri. Were you on 10 or 25 mg?