Brinsupri follow-up

Posted by scoop @scoop, Sep 29 12:21pm

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.

Profile picture for melinda561 @melinda561

Is anybody taking Brinsupri who is colonized with pseudomonas? If so, please share how you are doing and any side effects. Thank you.

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Sorry but I left that out. I am also colonized with pseudomonis. For that my ID doc has an every other month routine. During the month I am medicating I nebulize 1ml of colistamethate every other day. And on the days I'm not nebulizing I take cipro 250 mg. And I do seem to be coughing up less lung crap at this time.

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Profile picture for mpowers @mpowers501

Sorry but I left that out. I am also colonized with pseudomonis. For that my ID doc has an every other month routine. During the month I am medicating I nebulize 1ml of colistamethate every other day. And on the days I'm not nebulizing I take cipro 250 mg. And I do seem to be coughing up less lung crap at this time.

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@mpowers501
What do you mean by during the month I am medicating? Are you referring to Brinsupri?

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Profile picture for scoop @scoop

@gctaylor1 Thanks for posting these photos. I use prophylactically, especially in the winter, AmLactin Foot Repair Cream with 15% Lactic Acid AHA on my feet to ward off any potential thickening of skin, as I am also on Brinsupri (3+ months, so far no side effects except for feeling better, less coughing, less phlegm, better sleep, more energy!)

Because of the possible side effects on gums, I floss every day and use a recommended rinse after brushing/flossing, which I swish for 30 seconds before spitting out. The hygienist gave me a refresher on flossing, which I'm glad she did because I wasn't doing it correctly.

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@scoop, What recommended rinse do you use? Dr. Winthrop who was involved in the Brisupri trial told me that during the trial people did not develop dental problems, only dogs did. But for us, it is good to take precautions.

Ling

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Profile picture for irenea8 @irenea8

@mpowers501
What do you mean by during the month I am medicating? Are you referring to Brinsupri?

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No.. For the pseudomonis I medicate every other month. During tht month I nebulize colistamethate every other day and on the off days take cipro 250mg.

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Profile picture for mpowers @mpowers501

Brinsupri Update! I started Brinsupri (10 mg) 3 weeks ago on thanksgiving day. Not sure what is going on but I feel much better!!! I was really dragging prior to starting...I am battling Bronchiectasis, weak heart (30 ejection fraction, and neuropathy (caused by Linezolid)! I was extremely short of breath and had zero energy. I am still sob but not as bad as before. My coughing is not as bad as it was prior, and I may be coughing up slightly less lung crap. I have had no side effects up to now and can actually do some things around the house. Hopefully my improvement will continue. Thank you Brinsupri!!!

PS: First time I saw SOB in my records I wondered what I had done to offend those people!!

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@mpowers501

I am happy to hear those on Brinsupri have less coughing. It may be a placebo effect because, apparently results are not seen for a year.
All the best
Marie

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Profile picture for melinda561 @melinda561

Is anybody taking Brinsupri who is colonized with pseudomonas? If so, please share how you are doing and any side effects. Thank you.

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@melinda561
My lungs are colonized with pseudomonas & aspergillus. Been on brinsupri since 10-1-25. Mucus much clearer, thinner, almost transparent & not as copious or thick & yellow like it used to be. I posted about my recent illness regarding total different reaction being on brinsupri vs before taking it. Time will tell.

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Profile picture for robot @robot

@melinda561
My lungs are colonized with pseudomonas & aspergillus. Been on brinsupri since 10-1-25. Mucus much clearer, thinner, almost transparent & not as copious or thick & yellow like it used to be. I posted about my recent illness regarding total different reaction being on brinsupri vs before taking it. Time will tell.

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@robot I finished 2 week course of IV cefepime 10/16. November sputum showed rare pseudomonas. ID said to hold off on BRINSUPRI as she may treat pseudomonas again. I have an appointment 2/2/26. Brinsupri was approved for me and I’ve been hesitant because of pseudomonas flare up. Thanks for your response.

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Profile picture for melinda561 @melinda561

Is anybody taking Brinsupri who is colonized with pseudomonas? If so, please share how you are doing and any side effects. Thank you.

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@melinda561 I am colonized with pseudomonas. My BE specialist tells me that after 2 years it’s next to impossible to get rid of it. If I have flares or other symptoms he will treat it but right now I’m doing great with the combination of Brinsupri , nebs with albuterol and saline and airway clearance protocols. It’s hard to know what is making it better because it all pretty much started close together.

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Profile picture for melinda561 @melinda561

@robot I finished 2 week course of IV cefepime 10/16. November sputum showed rare pseudomonas. ID said to hold off on BRINSUPRI as she may treat pseudomonas again. I have an appointment 2/2/26. Brinsupri was approved for me and I’ve been hesitant because of pseudomonas flare up. Thanks for your response.

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@melinda561 My question to ID would be - why hold off on Brinsupri?? Pseudomonas infection could still be treated normally - mine always is treated with Levaquin during flares. If I have another flare, I would still be treated with Levaquin. There is nothing precluding both treatments. The fact that Brinsupri inhibits Dpp1 enzyme from causing increased mucus buildup in lungs is a plus because its in essence diminishing a growing field for the pseudomonas.

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Thank you, appreciate the feedback.

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