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.

Profile picture for jillcrawford @jillcrawford

I just wanted to share with you that after about 12 days on Brinsupri I have become cautiously optimistic.
I have noticed a surprising increase in my energy, less mucus, particularly green mucus. This was very surprising to me because as mentioned by other members, I didn’t expect any results or improvements until 4 to 6 weeks.’
I have cut back on my air clearance, particularly the best Vest because I fell and injured my back and could not cope with putting it on
Also, I missed one day of evening air clearance… surprisingly, I have Not noticed any difference even with the reduction in air clearance
Nevertheless, I have continued to feel much more energetic and strong. I never had much of a cough, but I do believe this could be a very promising drug for most of you.

I have upped my regimen slowly. I’m really fast walking 30 to 40 minutes and now I am able to do a little bit of a jog
This is truly a hopeful experience
Also, the study concluded that there was only a 20% reduction in flares and exacerbations, etc.
That may be the case, but overall, it has been a very positive experience
Minimal side effects Except for some annoying headaches, which disappeared after the first week
PS I’m on the 10 mg dose
I’ve tried it within without food and it doesn’t seem to make a difference although I do take it in the morning
I hope all of you have the opportunity too. Try this very promising medication.
It’s worth the hassle of getting it.
I’m terrified that this will change because really I haven’t felt this good in two years since I was first diagnosed with chronic pneumonia with abscess, etc.
Best regards to all Jill Crawford

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What is the hassle of getting Brinsupri from Medicare pharmaceutical benefits?

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Profile picture for jillcrawford @jillcrawford

I just wanted to share with you that after about 12 days on Brinsupri I have become cautiously optimistic.
I have noticed a surprising increase in my energy, less mucus, particularly green mucus. This was very surprising to me because as mentioned by other members, I didn’t expect any results or improvements until 4 to 6 weeks.’
I have cut back on my air clearance, particularly the best Vest because I fell and injured my back and could not cope with putting it on
Also, I missed one day of evening air clearance… surprisingly, I have Not noticed any difference even with the reduction in air clearance
Nevertheless, I have continued to feel much more energetic and strong. I never had much of a cough, but I do believe this could be a very promising drug for most of you.

I have upped my regimen slowly. I’m really fast walking 30 to 40 minutes and now I am able to do a little bit of a jog
This is truly a hopeful experience
Also, the study concluded that there was only a 20% reduction in flares and exacerbations, etc.
That may be the case, but overall, it has been a very positive experience
Minimal side effects Except for some annoying headaches, which disappeared after the first week
PS I’m on the 10 mg dose
I’ve tried it within without food and it doesn’t seem to make a difference although I do take it in the morning
I hope all of you have the opportunity too. Try this very promising medication.
It’s worth the hassle of getting it.
I’m terrified that this will change because really I haven’t felt this good in two years since I was first diagnosed with chronic pneumonia with abscess, etc.
Best regards to all Jill Crawford

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Insurance for this is very personalized. It all depends on your plan with Medicare or your secondary. I have Part D as well as an AARP/ Medicare RX plan and other than an initial $1500 out of pocket charge I am fully covered. I am a patient at Mayo Jacksonville and had no problem getting a prescription from my Doc there.

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Profile picture for picartist @picartist

What is the hassle of getting Brinsupri from Medicare pharmaceutical benefits?

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@picartist It arrived at my door a week after I asked my doctor for it. I had no copay. My Aetna Medicare was easy. I am a State of Illinois Retiree and our plan, as far as medication, is pretty good.

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Profile picture for jillcrawford @jillcrawford

I just wanted to share with you that after about 12 days on Brinsupri I have become cautiously optimistic.
I have noticed a surprising increase in my energy, less mucus, particularly green mucus. This was very surprising to me because as mentioned by other members, I didn’t expect any results or improvements until 4 to 6 weeks.’
I have cut back on my air clearance, particularly the best Vest because I fell and injured my back and could not cope with putting it on
Also, I missed one day of evening air clearance… surprisingly, I have Not noticed any difference even with the reduction in air clearance
Nevertheless, I have continued to feel much more energetic and strong. I never had much of a cough, but I do believe this could be a very promising drug for most of you.

I have upped my regimen slowly. I’m really fast walking 30 to 40 minutes and now I am able to do a little bit of a jog
This is truly a hopeful experience
Also, the study concluded that there was only a 20% reduction in flares and exacerbations, etc.
That may be the case, but overall, it has been a very positive experience
Minimal side effects Except for some annoying headaches, which disappeared after the first week
PS I’m on the 10 mg dose
I’ve tried it within without food and it doesn’t seem to make a difference although I do take it in the morning
I hope all of you have the opportunity too. Try this very promising medication.
It’s worth the hassle of getting it.
I’m terrified that this will change because really I haven’t felt this good in two years since I was first diagnosed with chronic pneumonia with abscess, etc.
Best regards to all Jill Crawford

Jump to this post

I started Brinsupri 4 weeks ago. The first week I was having a flare up and needed a bronchoscopy. The next almost three weeks my experience was like many have related: less coughing, less mucous, less tired, no wheezing. Then on the 4th week I suddenly had more and more trouble breathing, little mucous though, wheezing increased to constantly and a few coughing spells. I sound like I have a cold, stuffed up. I see my doctor tomorrow but perhaps I have an upper respiratory infection as noted in some side effects. I'm very bummed and hope I am not sliding back to the old way of feeling. Has anyone had this experience of feeling better and better only to slide back to difficulty breathing and coughing?

REPLY
Profile picture for jillcrawford @jillcrawford

I just wanted to share with you that after about 12 days on Brinsupri I have become cautiously optimistic.
I have noticed a surprising increase in my energy, less mucus, particularly green mucus. This was very surprising to me because as mentioned by other members, I didn’t expect any results or improvements until 4 to 6 weeks.’
I have cut back on my air clearance, particularly the best Vest because I fell and injured my back and could not cope with putting it on
Also, I missed one day of evening air clearance… surprisingly, I have Not noticed any difference even with the reduction in air clearance
Nevertheless, I have continued to feel much more energetic and strong. I never had much of a cough, but I do believe this could be a very promising drug for most of you.

I have upped my regimen slowly. I’m really fast walking 30 to 40 minutes and now I am able to do a little bit of a jog
This is truly a hopeful experience
Also, the study concluded that there was only a 20% reduction in flares and exacerbations, etc.
That may be the case, but overall, it has been a very positive experience
Minimal side effects Except for some annoying headaches, which disappeared after the first week
PS I’m on the 10 mg dose
I’ve tried it within without food and it doesn’t seem to make a difference although I do take it in the morning
I hope all of you have the opportunity too. Try this very promising medication.
It’s worth the hassle of getting it.
I’m terrified that this will change because really I haven’t felt this good in two years since I was first diagnosed with chronic pneumonia with abscess, etc.
Best regards to all Jill Crawford

Jump to this post

I have been on it for two weeks. The biggest thing I notice: nothing! By that I mean within two days of starting the drug, I am no longer reminded by extreme shortness of breath all day long that I have a lung disease. For most of the day, I do not feel sick. When I nebulize saline or hammer uphill on the bicycle, I am not wheezing, and if I cough, it is productive, not stuck in my throat. On the bicycle, my heart rate was jumping to 200 when I went up a hard hill (I had a full cardiac workup a month ago‚ echocardiogram and heart catheterization, and all was normal with that system.) Now I have a hard time getting it to 160, and my VO2 max has gone up to 36 for the first time this year. Morning after waking up and lying down at night are rocky for about a half hour, but otherwise I feel great. I still have to do all the things I was doing before, but this has made a world of difference for me.

REPLY
Profile picture for deestrada @deestrada

I started Brinsupri 4 weeks ago. The first week I was having a flare up and needed a bronchoscopy. The next almost three weeks my experience was like many have related: less coughing, less mucous, less tired, no wheezing. Then on the 4th week I suddenly had more and more trouble breathing, little mucous though, wheezing increased to constantly and a few coughing spells. I sound like I have a cold, stuffed up. I see my doctor tomorrow but perhaps I have an upper respiratory infection as noted in some side effects. I'm very bummed and hope I am not sliding back to the old way of feeling. Has anyone had this experience of feeling better and better only to slide back to difficulty breathing and coughing?

Jump to this post

@deestrada Yes! I started Brinsupri a little over 4 weeks ago. First 3 weeks went swimmingly; the last week I've become chestier. Today I dropped off a sputum sample wondering if something might be going on. More coughing spells and sleeping not as well as weeks 1-3. I've read that there is an adjustment phase and it can take up to 3+ months to reach a new baseline. Hoping....

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Profile picture for pa 111 @pagechapman

I am entering my second month on 25 mg. An amazing difference for me with no side effects. I used to have 10-15 violent coughing events per day. I am now down to one of two. My energy is back, my appetite better , my mucous production less. In short it is all very positive so far. Not to overuse the words, but this indeed has been a miracle drug for me (87 years old and 2 1/2 years since diagnosis at Mayo). Fingers crossed that it continues to work. PCIII

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Profile picture for jillcrawford @jillcrawford

I just wanted to share with you that after about 12 days on Brinsupri I have become cautiously optimistic.
I have noticed a surprising increase in my energy, less mucus, particularly green mucus. This was very surprising to me because as mentioned by other members, I didn’t expect any results or improvements until 4 to 6 weeks.’
I have cut back on my air clearance, particularly the best Vest because I fell and injured my back and could not cope with putting it on
Also, I missed one day of evening air clearance… surprisingly, I have Not noticed any difference even with the reduction in air clearance
Nevertheless, I have continued to feel much more energetic and strong. I never had much of a cough, but I do believe this could be a very promising drug for most of you.

I have upped my regimen slowly. I’m really fast walking 30 to 40 minutes and now I am able to do a little bit of a jog
This is truly a hopeful experience
Also, the study concluded that there was only a 20% reduction in flares and exacerbations, etc.
That may be the case, but overall, it has been a very positive experience
Minimal side effects Except for some annoying headaches, which disappeared after the first week
PS I’m on the 10 mg dose
I’ve tried it within without food and it doesn’t seem to make a difference although I do take it in the morning
I hope all of you have the opportunity too. Try this very promising medication.
It’s worth the hassle of getting it.
I’m terrified that this will change because really I haven’t felt this good in two years since I was first diagnosed with chronic pneumonia with abscess, etc.
Best regards to all Jill Crawford

Jump to this post

so reassuring I’m so happy that you respond positively
This is a dream come true if it continues. My life was previously all about Understand be and I was limiting my world accordingly. Now all possibilities have reopened, even though I’m now 75.

Please let me know if you’re positive reaction continues
There was a new study release today, which showed that there were positive structural impact on the lungs on the 25 mg dose evident in follow up CT scans, etc.
So I don’t think this is a fluke Maybe the real thing that we have been waiting for

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Profile picture for spectrumcyclist @spectrumcyclist

I have been on it for two weeks. The biggest thing I notice: nothing! By that I mean within two days of starting the drug, I am no longer reminded by extreme shortness of breath all day long that I have a lung disease. For most of the day, I do not feel sick. When I nebulize saline or hammer uphill on the bicycle, I am not wheezing, and if I cough, it is productive, not stuck in my throat. On the bicycle, my heart rate was jumping to 200 when I went up a hard hill (I had a full cardiac workup a month ago‚ echocardiogram and heart catheterization, and all was normal with that system.) Now I have a hard time getting it to 160, and my VO2 max has gone up to 36 for the first time this year. Morning after waking up and lying down at night are rocky for about a half hour, but otherwise I feel great. I still have to do all the things I was doing before, but this has made a world of difference for me.

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@spectrumcyclist
yay team
we should pull our responses and do our own analysis because the current data does not seem to consider early subjective responses that we seem to all be having

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Profile picture for spectrumcyclist @spectrumcyclist

I have been on it for two weeks. The biggest thing I notice: nothing! By that I mean within two days of starting the drug, I am no longer reminded by extreme shortness of breath all day long that I have a lung disease. For most of the day, I do not feel sick. When I nebulize saline or hammer uphill on the bicycle, I am not wheezing, and if I cough, it is productive, not stuck in my throat. On the bicycle, my heart rate was jumping to 200 when I went up a hard hill (I had a full cardiac workup a month ago‚ echocardiogram and heart catheterization, and all was normal with that system.) Now I have a hard time getting it to 160, and my VO2 max has gone up to 36 for the first time this year. Morning after waking up and lying down at night are rocky for about a half hour, but otherwise I feel great. I still have to do all the things I was doing before, but this has made a world of difference for me.

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@spectrumcyclist
Great news! Do you have MAC also as well as Bronchiectasis? Also, as a fellow bike rider, I am interested to know how you figure out your VO2 Max. I thought this was something that had to be measured in an "exercise lab" of some sort.

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