Brinsupri follow-up
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?
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BRINSUPRI™: A Beginning for the Bronchiectasis Community
“This multi-modality strategy has long been the standard for other chronic diseases, such as congestive heart failure, and bronchiectasis warrants an equally nuanced approach.” Dr. PJ McShane
Some people have now been on BRINSUPRI™ for a month or two, and we are beginning to hear early feedback. It is always encouraging to learn that someone’s quality of life has improved with more energy and less breathlessness.
At the same time, others have not yet noticed a difference, and a few have stopped taking the medication for various reasons.
This is why it is important to share recent comments from Dr. PJ McShane, one of the leading bronchiectasis experts at the National Institutes of Health (NIH).
In a recent Archivos de Bronconeumologia editorial, Dr. McShane describes BRINSUPRI, as a breakthrough for the bronchiectasis community and as an important step forward in reducing inflammation and exacerbations for people living with bronchiectasis.
However, she emphasizes that it’s unrealistic to expect one drug to meet every patient’s needs. Instead, she encourages both clinicians and patients to view BRINSUPRI™ as part of a broader treatment plan that includes mucoactive agents, airway-clearance techniques, and, when appropriate, macrolide therapy.
She made similar remarks during an unrecorded Bronchiectasis and NTM Association support group meeting, which many of us found insightful.
Bronchiectasis is a complex condition, and many people may benefit from a multi-pronged approach that also targets mucus properties and airway inflammation. Other chronic diseases require combination therapy to achieve optimal results, and it is reasonable to assume that bronchiectasis may be similar.
Progress takes time, and each person’s journey will look a little different.
Editorial: P.J. McShane, Are Dipeptidyl Peptidase-1 Inhibitors the Future Anti-inflammatory Treatment in Bronchiectasis? Archivos de Bronconeumología, https://doi.org/10.1016/j.arbres.2025.09.002
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5 ReactionsExcellent point about combining strategies. Brinsupri’s exciting, but it’s one piece of the puzzle. Maybe more like managing asthma or diabetes — ongoing care, not a single fix.
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2 ReactionsHi
Im also pretty new on here.
I was on here maybe 5 years sgo when mycobacterium abcessus showed up in mu sputum several times. But then it dissappeared without treatment until my last bronchoscopy and it showed up once again.
I asked my pulmonary for Brinsupri when is came out and he agreed so he started me on 10 mg tables 2 weeks ago.
Im interested in following on how others are doing with Brinsupri also.
I spoke to the Brinsupri pharmacist yesterday about the gum teeth side effects. She said no had dropped out of the study because of any gum issues.
I just want to breath better. I have asthma an BE withb RA. I need bronchoscopys every 2-3 months. I had a bronchoscopy last monday and the report said 6 inch mucus plugs were removed. I usually am a bit unproductive in my mucus clearing.
I have the volara and vest. The volara helps the most so I don't use the vest much.
Im hoping and praying this new drug helps us in our battle of BE!
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1 Reaction@sueinmn I do saline and Aerobika to clear mucus. I am not sure what a "plug" is. I see it used for different things. Is it what I cough up which are round yellow or light green mucus rounds about the size of a quarter. I cough up maybe five to ten of those daily when I do my therapy and until my lung breaths seem cleared.
@picartist I'm not sure what people are calling plugs, and to be honest I don'texamine mine unless Iam ill and need to see if it has turned color. Who can explain exactly what they mean? @blm1007blm1007 and others who hav mentioned mucus plugs, can you help us ut here?
@dpaula
why would you have to sign papers????
@regen99 probably a poor choice of words on my part. My general pulmonologist (I am not currently being seen in a Bronchiectasis Center) initially just called the prescription into my regular pharmacy Kroger and of course we all know now that is not the route for us to get on this medication. He then must have reached out to Insmed to find out how to get me Brinsupri. They then sent him, a "Patient Support Program Enrollment Form". That is the "papers" I was referring to I had to sign via email. My prescription was sent to Amber Pharmacy one of the specialty pharmacies that happens to be located in Nebraska. My insurance company, Medicare Part D Blue Cross Blue Shield Prescription Blue PDP, initially rejected the medication for me. My pulmonologist appealed and I was accepted though I had to meet the remaining Medicare Out of Pocket expenses for the year which was about $950 for me. I did not request help with the $950 because I do not believe our income will qualify for help. I might explore this come January when my cost will be the full out of pocket Medicare has set for 2026. I have been on the medication Brinsupri 25 mgs. for 10 days. I will say this, my pulmonologist initially called in 10mgs to Kroger and since I learned that 25mgs might be better for my situation I was able to get that changed by the time the prescription got to Amber pharmacy. So I am grateful for that little time lag I had there to remedy the dosage.
As for how I am doing on ten days, so far no side effects though it is way early and my sputum volume is still up there at about 100 cc per day but lighter color and less thick by a lot. My last CT Scan was just days before I stared to medication and despite everything I am doing right it was worse with more mucoid impaction. So I am hoping beyond hope that this medication will help me move the junk out and eventually cut down the sputum.
@irenea8 tagging you as a followup so that you can see my prescription plan did accept the Brinsupri.
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2 Reactions@dpaula
Thank you for your cogent explanation. Very helpful in revealing yet more of the senseless processes they put us thru.
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2 Reactions@sueinmn
Hi Sue
This is from AI
Yes, bronchiectasis can cause mucus plugs, as it is characterized by impaired mucus clearance and an accumulation of mucus. The chronic inflammation and structural changes in the airways of those with bronchiectasis lead to mucus that is thicker and more prone to forming plugs, particularly in the distal airways.
Also
This is from my bronchoscopy report:
Mucus, plugging the
airway, was found throughout the tracheobronchial
tree. The mucus was copious, white and thick. The
underlying mucosa is erythematous. Virtually all
segmental airways were plugged with long tenacious
plugs. The scope was removed x 4 with long plugs in
tow, that would not pass thru the scope with maximal
suction. The plugs were up to 15 cm in length forming
Shoot I wish I could cough out this stuff!
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1 Reaction@pfists Thank you for the description. Do you use saline, Mucinex or anything else to thin your mucus?