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Brinsupri experience after 3+ months

Posted by scoop @scoop, Jan 2 10:34am

Brinsupri may take 3–6 months to reach full effect.
Please use this thread to share first-hand experiences only if you have been on Brinsupri for 3 months or longer.

To keep this discussion useful and focused, let’s limit comments to actual outcomes, side effects, or changes you’ve observed after at least 3 months of use.

General questions, early impressions (< 3 months), speculation, or unrelated discussions please post in a separate thread.

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

Profile picture for sweethighland
sweethighland | @sweethighland | 1 day ago
In reply to @jago "@sweethighland I'm also a low BP person. I take Trace Electrolyte Stamina pills instead of drink..." + (show)
Profile picture for jago @jago

@sweethighland I'm also a low BP person. I take Trace Electrolyte Stamina pills instead of drink mixes to avoid added sugar. I do notice an improvement on the drug, and I'm less apprehensive to be social since the coughing has reduced and not as overwhelming. I have some chest tightness, but I also have asthma which could be the cause. Also, the only other possible side effect is thinning hair. That could be from Brinsupri or something else?

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@jago Thank you very much. I will look into Trace Electrolyte pills as Liquid IV has too much sugar. I'm a little but reluctant to start Brinsupri because I have yellow/green mucus everyday and afraid the medication will dry the mucus and give me more infection.

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Profile picture for jingles13
jingles13 | @jingles13 | 1 day ago
In reply to @evcburke51 "I have been on 10mg Brinsupri for 7 months. I don’t notice any appreciable difference in..." + (show)
Profile picture for evcburke51 @evcburke51

I have been on 10mg Brinsupri for 7 months. I don’t notice any appreciable difference in my Bronchiectasis. Has anyone had tooth and jaw pain? I talked with my dentist and she is very proactive and carefully monitoring. However, the pain is troubling.

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@evcburke51 No I am on 50 MG. Not sure why a doctor would prescribe 25. You may want to ask him to up it. Go for the max, especially if you have not gotten any relief from the 25. I would think by now you would have noticed the effects. My symptoms were horrible, but they have improved in less than 3 weeks. Good luck.

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Mentor
Sue, Volunteer Mentor | @sueinmn | 1 day ago
In reply to @jingles13 "@evcburke51 No I am on 50 MG. Not sure why a doctor would prescribe 25. You..." + (show)
Profile picture for jingles13 @jingles13

@evcburke51 No I am on 50 MG. Not sure why a doctor would prescribe 25. You may want to ask him to up it. Go for the max, especially if you have not gotten any relief from the 25. I would think by now you would have noticed the effects. My symptoms were horrible, but they have improved in less than 3 weeks. Good luck.

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@jingles13 Wow, the recommended dosage is either 10mgg or 25mg. Not sure how your doc got approval for 50mg.

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cwal | @cwal | 1 day ago
In reply to @scoop "@robot No, not for me. But if you read through this thread you'll see that many..." + (show)
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@robot
No, not for me. But if you read through this thread you'll see that many experience a number of plateaus before stabilizing. 3 steps forward, 2 back, and sometimes vice versa.

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@scoop
That is so true about experiencing several different plateaus before stabilizing. I have had those plateaus over the roughly 9 months I've been on Brinsupri. I seem to be quite stable now and "lung life" is so much better. I am so glad I just stuck with it through my different "plateaus" and doubts now. I am amazed at how much better I am.

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cwal | @cwal | 1 day ago
In reply to @robot "I have been on Brinsupri since October 1, 2025, and the last three days I developed..." + (show)
Profile picture for robot @robot

I have been on Brinsupri since October 1, 2025, and the last three days I developed very severe heartburn that I am attempting to treat with omeprazole Pepcid and alkaline water. I read that Brinsupri is designed to reduce inflammation and mucus buildup in airways and may impact digestive track due to changes in mucus production. I have notified Insmed through the inlighten coordinator and my pulmonologist. Has anyone had any experience with this being a problem? I am hoping it is just a result of coffee and or acidic foods and am adjusting my diet accordingly. But I would be interested if anyone has had this problem.

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@robot
Like @scoop stated, many of us experience several different plateaus before stabilizing. I have myself and I seem to be quite stable now. Some of those different "bumps in the road" I experienced I have even forgotten about until I read something someone else says they experienced and then I remember, Oh yeah, I did have that for a couple of weeks but it passed. That's what I did when I read your post about experiencing heartburn. I had forgotten all about having that for a while.

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Profile picture for blm1007blm1007
blm1007blm1007 | @blm1007blm1007 | 8 hours ago
In reply to @sweethighland "@jago Thank you very much. I will look into Trace Electrolyte pills as Liquid IV has..." + (show)
Profile picture for sweethighland @sweethighland

@jago Thank you very much. I will look into Trace Electrolyte pills as Liquid IV has too much sugar. I'm a little but reluctant to start Brinsupri because I have yellow/green mucus everyday and afraid the medication will dry the mucus and give me more infection.

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@sweethighland What type of infection do you have...since your mucus is yellow/green.
I have had a low load of MAI since my diagnosis with MAI in OCT. 2023.
When I first started out mine was green and haven't had that for a little over a year.
For me the nebulizing, percussion, postural drainage and getting it up and out with what I hope I do as the huff cough. I also somewhat gargle it up...just hope that won't affect my vocal cords. However I have been doing that for at least three years and so far all is O.K.
I know postural drainage for some is not possible due to acid reflux.
I take it you are doing most of all that.
I also feel, for me, wearing the N 95 mask when I go out in public has helped me to bring up the mucus and mucus plugs. I guess it is the moisture etc. of breathing back in the warm air, don't know for sure why it helps me but it does appear to loosening the mucus.
Barbara

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Profile picture for blm1007blm1007
blm1007blm1007 | @blm1007blm1007 | 7 hours ago
In reply to @jago "@sweethighland I'm also a low BP person. I take Trace Electrolyte Stamina pills instead of drink..." + (show)
Profile picture for jago @jago

@sweethighland I'm also a low BP person. I take Trace Electrolyte Stamina pills instead of drink mixes to avoid added sugar. I do notice an improvement on the drug, and I'm less apprehensive to be social since the coughing has reduced and not as overwhelming. I have some chest tightness, but I also have asthma which could be the cause. Also, the only other possible side effect is thinning hair. That could be from Brinsupri or something else?

Jump to this post

@jago I looked up Trace Electrolyte Stamina pills. Looks good. I have taken Ultima in the past that did not have "fruit" flavoring. I always prefer to be sure sugar is not on the label and not artificial flavorings.
Glad you mentioned Trace Electrolyte Stamina pills.
Barbara

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