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 Liz @ursala7

@blm1007blm1007 Thx, good suggestions about the vinegar water. That's going to be a new addition to my regimen. I go through a few dollar toothbrushes a month - like if I was just too tired to boil my oral B's the night before. I do hold the cheapos over simmer water and will use them again. I will now put them in the vinegar and then rinse them in the purified water.
Kind of amazing...all that we do to try to thwart the advance of this MAI!

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@ursala7 Diluted vinegar does not kill NTM, soaking in it just adds another "thing to do" that has no benefit.
A 30 minute soak in full strength (6%) vinegar (ascetic acid) can kill NTM on a hard surface like nebulizer parts. As far as I know it has not been tested on a toothbrush, with its dense bristles, nooks and crannies. The best advice is to replace the toothbrush every 2 months or after any infection or illness. And don't swallow while brushing & rinsing.

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Profile picture for blm1007blm1007 @blm1007blm1007

@ursala7 First, do you call the dentist office to check to see if there has been a cancelation. I do that often each morning during the week until they say yes, we can see you.
Dry Mouth: Do you know if you sleep with your mouth open at night. Many begin to do this and it can cause dry mouth. I, as well as Scoop tape our mouths closed with 3M micropore tape a piece the size of a postage stamp, as scoop would say. It helps with the dry mouth.
Extra AirWay Clearance. Want to get all that mucus moving up and out. Actually I haven't done the extra clearance yet!!!
Hack vs Huff Cough: Be careful. The wrong type of cough isn't good for the lungs. My speech therapist said hacking is a no, no due to possible problems it would cause with the vocal cords. I wish I could describe how she told me to help get it up and moving. More or less repeat and slowly say a moderate huh, huh. Have you been referred to a Speech Therapist...a Speech Therapist has helped a couple of us on Mayo with Bronchiectasis.
Mouth/Teeth: For me I use my boiled water with salt in it. I keep a small jar in the medicine cabinet and clean/refill as needed to rinse my mouth out after brushing my teeth. I think it helps in various ways. Might be worth a try. No cavities so far, but we are all different.
Mucinex: I don't use it yet. Many do however. You know what is best for you overall and your experiences when you are or are not using it.

"Cascade into many"...would like for all good things to 'cascade' for you and all of us with the 'no fun' routine with Bronchiectasis.
Barbara

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@blm1007blm1007

It is my understand that neither salt water or vinegar kill NTM. I'm trying to figure out if your procedure is to kill harmful bacterial or just washing off as much as you can without boiling them?

Thanks, Martha

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Yes, I know...."salt water or vinegar will not kill NTM" , thanks.
However, my toothbrush is one of those things I decided to put under the umbrella of what Dr. Honda said in her talk......about making our decisions of what precautions we ourselves are willing to do or not do. Not her exact words.
Meaning for us, we have to make choices to help us to have a life etc. and not be overwhelmed with all the possible precautions to avoid MAC and infections.
Fortunately for me my mucus at first was deep green 2019 and now without taking antibiotics and just doing those things I do, my MAI load is low and the mucus is no longer green. It is and now stays, so far, in the light yellow color and the MAI stays at a low load.
Again, thanks...for your statement to be sure I knew.
Barbara

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Profile picture for Sue, Volunteer Mentor @sueinmn

@ursala7 Diluted vinegar does not kill NTM, soaking in it just adds another "thing to do" that has no benefit.
A 30 minute soak in full strength (6%) vinegar (ascetic acid) can kill NTM on a hard surface like nebulizer parts. As far as I know it has not been tested on a toothbrush, with its dense bristles, nooks and crannies. The best advice is to replace the toothbrush every 2 months or after any infection or illness. And don't swallow while brushing & rinsing.

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@sueinmn Yes, true there are a lot of nooks and crannies. I have such thick phlegm that I cough up, which coats my mouth and tongue all the time, which I'm sure transfers to the brush. I feel better putting it in my mouth if it has been at least soaked. I'd rather boil them, but that isn't going to happen three or more times a day!

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Profile picture for Liz @ursala7

@sueinmn Yes, true there are a lot of nooks and crannies. I have such thick phlegm that I cough up, which coats my mouth and tongue all the time, which I'm sure transfers to the brush. I feel better putting it in my mouth if it has been at least soaked. I'd rather boil them, but that isn't going to happen three or more times a day!

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@ursala7 How about washing it with toothpaste or mouthwash and replacing frequently? I soak wash my electric toothbrush head daily, soak in peroxide weekly, and replace every 2 months, all suggested by my dentist. Pretty cheap "insurance."

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Profile picture for Sue, Volunteer Mentor @sueinmn

@ursala7 How about washing it with toothpaste or mouthwash and replacing frequently? I soak wash my electric toothbrush head daily, soak in peroxide weekly, and replace every 2 months, all suggested by my dentist. Pretty cheap "insurance."

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@sueinmn Thx! Yes, I just have to remember to use my boiled water to rinse it, as I don't have the micron filtration on any sink yet. I figure the Big 3 meds are giving me a little protection for now, but I'll have to buckle down on the drinking water issue soon.

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Profile picture for Liz @ursala7

@sueinmn Yes, true there are a lot of nooks and crannies. I have such thick phlegm that I cough up, which coats my mouth and tongue all the time, which I'm sure transfers to the brush. I feel better putting it in my mouth if it has been at least soaked. I'd rather boil them, but that isn't going to happen three or more times a day!

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@ursala7 I have several toothbrush heads that I soak, clean then sterilize. Brinsupri has helped tremendously in controlling amount of mucous, coughing etc.

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Profile picture for jessed @jessed

@ursala7 Inever thought to boil my electric toothbrushes. I will do that when sterilizing my neb and aeorbika. Thanks! jessed

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@jessed
I didn't know tooth brushes could be boiled. It doesn't melt them?

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Profile picture for blm1007blm1007 @blm1007blm1007

Yes, I know...."salt water or vinegar will not kill NTM" , thanks.
However, my toothbrush is one of those things I decided to put under the umbrella of what Dr. Honda said in her talk......about making our decisions of what precautions we ourselves are willing to do or not do. Not her exact words.
Meaning for us, we have to make choices to help us to have a life etc. and not be overwhelmed with all the possible precautions to avoid MAC and infections.
Fortunately for me my mucus at first was deep green 2019 and now without taking antibiotics and just doing those things I do, my MAI load is low and the mucus is no longer green. It is and now stays, so far, in the light yellow color and the MAI stays at a low load.
Again, thanks...for your statement to be sure I knew.
Barbara

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@blm1007blm1007

Barbara, sounds like you’ve made great progress to go from green to light yellow mucous. My understanding is that you improved by doing the things you do. Is that airway clearance?
I like your Dr’s philosophy. I chose to walk at the pool at Y still swim laps. But I did change tooth brush heads and plan to sterilize sometimes w Aerobika and Neb after recent posts.

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I started Brinsupri Sep 2025. For the first time in 3 years my heavy growth pseudonomas is undetectable in my sputum culture . As my pulmo says it s prob still there but minimal which is good I don’t know if it’s the Brinsupri or religious airway clearance but I’m thrilled. No flares or need for antibiotics for at least a year now.

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