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.

My insurance company finally approved this. Zero copay. I have been on Brinsurpi for 2 1/2 weeks. I had MAC, etc. Just finished that treatment. I am noticing a big improvement. No problem walking up steps, etc. And it has given me more energy. Every other med I was on did nothing. This maybe the one!

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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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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
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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Profile picture for sweethighland @sweethighland

@jago Thank you very much for your response. Do you notice big improvement in your lungs health? I drink plenty of water and since I am a low blood pressure person, my BP tends to go down. What electrolyte pills do you take? I have lungs tightness and heaviness everyday.

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@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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Profile picture for mimmzy @mimmzy

@sweethighland I took 250 for azithromycin. Mucinex 1200 once a day. Was taking NAC with nebulizer but it made me cough more. Pill form 500 mg. I did take twice a day but Pulmonologist changed to just 1 a day.

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@mimmzy Thank you. Now that you are on Brinsupri, do you still need to take Azithro, Mucinex and NAC? I have never nebulize NAC only 3% saline. I was on 250mg Azithro during winter but I started having stomach issue, so I had to stop.

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Profile picture for jingles13 @jingles13

My insurance company finally approved this. Zero copay. I have been on Brinsurpi for 2 1/2 weeks. I had MAC, etc. Just finished that treatment. I am noticing a big improvement. No problem walking up steps, etc. And it has given me more energy. Every other med I was on did nothing. This maybe the one!

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@jingles13 are you on 25mg or 10mg?

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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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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
Yes, I have jaw pain which developed after dental work in November. I started Brinsupri in September. My dentist checked me out. Teeth and gums look ok. I did not see jaw pain on the list of potential side effects but did read about gum changes.

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Profile picture for sweethighland @sweethighland

@mimmzy Thank you. Now that you are on Brinsupri, do you still need to take Azithro, Mucinex and NAC? I have never nebulize NAC only 3% saline. I was on 250mg Azithro during winter but I started having stomach issue, so I had to stop.

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@sweethighland I no longer take Azithromycin. Cannot take it with Brinsupri. When I was taking it, it was 3 times a week. Mondays I always had stomach issues. I also nebulize with 3% sodium. Probiotics help.

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Profile picture for mimmzy @mimmzy

@sweethighland I no longer take Azithromycin. Cannot take it with Brinsupri. When I was taking it, it was 3 times a week. Mondays I always had stomach issues. I also nebulize with 3% sodium. Probiotics help.

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@mimmzy Thank you.

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