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Brinsupri follow-up

Posted by scoop @scoop, Sep 29, 2025

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.

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fran1949 | @fran1949 | Dec 28, 2025

Heidi, MAC took 2 1/2 years to clear. I went to a rare disease specialist from the Mayo client.
My first pulmonary wasted 8 month. The specialist got on Arocase and that made the difference.
He is the same Dr, for Brinsupri.

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heidi0974 | @heidi0974 | Dec 28, 2025
In reply to @fran1949 "Heidi, MAC took 2 1/2 years to clear. I went to a rare disease specialist from..." + (show)
Profile picture for fran1949 @fran1949

Heidi, MAC took 2 1/2 years to clear. I went to a rare disease specialist from the Mayo client.
My first pulmonary wasted 8 month. The specialist got on Arocase and that made the difference.
He is the same Dr, for Brinsupri.

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@fran1949 Very helpful, thank you.

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jassa | @jassa | Dec 29, 2025
In reply to @kpger "@jassa I reported a couple weeks ago that my hair seemed a lot more brittle since..." + (show)
Profile picture for kpger @kpger

@jassa I reported a couple weeks ago that my hair seemed a lot more brittle since I started taking it on 10/4. Well, since then it's gotten noticeably thinner and my eyebrows are also showing signs of thinning. I've recently started having some minor gum irritation as well. I'm not really willing to continue taking it if this is happening so soon after starting it.

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@kpger I had the same exact reaction as you. I stopped taking it hoping my hair stops falling out. The tingling in my gums went away.

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jassa | @jassa | Dec 29, 2025
In reply to @renee53 "I have been on Brinsupri for over a month. I have successfully treated my Mac for..." + (show)
Profile picture for renee53 @renee53

I have been on Brinsupri for over a month. I have successfully treated my Mac for over two years now. I have Bronchiectasis and chronic pseudomonas. Since starting this drug I have been having continuous positive results. My coughing is down about 70%. Much less mucus. Fatigue is better. Those are wins, wins for me. Each day seems to get a little bit better. I have had so many flare-up’s, even been on a pic line, and am currently on arkcayce three times a week, but this is the first in terms of quieting down my symptoms. I am on 25mg.

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@renee53 I'm just curious, what is the reason you are taking Arikayce. Are you MAC positive? You said you successfully treated MAC.

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jillmac | @jillmac | Dec 29, 2025
In reply to @fran1949 "Heidi, MAC took 2 1/2 years to clear. I went to a rare disease specialist from..." + (show)
Profile picture for fran1949 @fran1949

Heidi, MAC took 2 1/2 years to clear. I went to a rare disease specialist from the Mayo client.
My first pulmonary wasted 8 month. The specialist got on Arocase and that made the difference.
He is the same Dr, for Brinsupri.

Jump to this post

@fran1949 What is Arocase which the specialist got on that made the difference?

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heidi0974 | @heidi0974 | Dec 30, 2025
In reply to @crepass "I have been on brinsupri one month. I’m hesitant to share so soon how much change..." + (show)
Profile picture for crepass @crepass

I have been on brinsupri one month. I’m hesitant to share so soon how much change I have noticed in my quality of life because they say 2-3 months before expected “changes”.
These are things I have experienced. Decreased mucus production, decreased fatigue, decreased coughing, decreased use of cough drops. I must share at the same time I started on brinsupri, I had also started on stiolto to to control my worsening cough this past year. but I am hopeful about feeling better and staying healthier. my regimen of 7% nacl nebs and act twice daily remains the same. and i have been mac free for almost 3 years.but still have BE.

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@crepass Hi,I’m curious how you are doing by now? I started Brinsupri Dec 4 th and am interested in those ahead of me.I have BE and MAC. I was treated for nine weeks with an antibiotic for the inflammation and infection,( not the MAC regimen). I’m certainly better since treatment all started October 13th, but hoping for more progress yet with the Brinsupri. I do rigorous ACT twice daily.I'm getting along great with Brinsupri regarding no side effects.

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fran1949 | @fran1949 | Dec 30, 2025
In reply to @jillmac "@fran1949 What is Arocase which the specialist got on that made the difference?" + (show)
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@fran1949 What is Arocase which the specialist got on that made the difference?

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I may have misspelled the med. It is Arikayce a nebularizer
with drugs that are kept in the ref. you do it daily.
You also keep taking antibiotics. You bring up huge
amounts of sticky mucus,

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tomdeleo | @tomdeleo | Dec 30, 2025

I started Brinsupri on 9/21 through December and have not had any improvement. Same with Ohtuvayre and Dupixent.

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crepass | @crepass | Dec 30, 2025
In reply to @heidi0974 "@crepass Hi,I’m curious how you are doing by now? I started Brinsupri Dec 4 th and..." + (show)
Profile picture for heidi0974 @heidi0974

@crepass Hi,I’m curious how you are doing by now? I started Brinsupri Dec 4 th and am interested in those ahead of me.I have BE and MAC. I was treated for nine weeks with an antibiotic for the inflammation and infection,( not the MAC regimen). I’m certainly better since treatment all started October 13th, but hoping for more progress yet with the Brinsupri. I do rigorous ACT twice daily.I'm getting along great with Brinsupri regarding no side effects.

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@heidi0974 - Hi, I have been waiting to post until I got through the "sick season". Happy to say, that I was pretty well despite the grandkids passing viruses back and forth.
My goal in October was to make it through an outside nighttime wedding. (without coughing). In early October I did have to go on antibiotics for 10 days but it cleared up by the wedding. Usually I would never bounce back so quickly. Sad to say I got sick after thanksgiving and my sputum came back with strep, so more antibiotics (fever, increased mucus, etc.)...but again, I cleared up after 2 weeks with no coughing, very little sputum, and no fever. I think I read that these URI's are one of the possible side effects of Brinsupri (and 6 grandchildren under the age of 7). But I feel better than I have in a couple of years. Of course, still doing all the saline nebs, and airway clearance and masking. Cindy

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crepass | @crepass | Dec 30, 2025
In reply to @renee53 "Has anyone noticed an increase in weight since taking Brinsupri. I was wondering becasue I lost..." + (show)
Profile picture for renee53 @renee53

Has anyone noticed an increase in weight since taking Brinsupri. I was wondering becasue I lost weight with MAC and bronchectasis , so if this medicine decreases the severity of the symptoms, will it also bring my appetite back. Thank you to anyone who has been on this long enough to know

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@renee53 . Yes, I had lost too much weight the last 4 years. I have a much better appetite, probably because since starting brensupri, the cough has gone away and I am not afraid of choking on food. So have put back a couple of pounds.

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