Brinsupri (aka Brensocatib)
FDA approved Brensocatib today. Hooray for us. Let’s hope we have access to it as soon as possible and it gives us some measure of relief. Thank you to all the scientists and doctors and patients!
https://www.multivu.com/insmed/9347351-en-fda-approves-brinsupri-brensocatib
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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So many people starting BRINSUPRI! Small co-pay. 👏 Huge credit to Insmed for fast rollout, clear info & a stellar helpline.
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7 ReactionsJust spent one week at National Jewish Health and being prescribed Brinsupri - Dr taking care of paperwork and getting insurance approval. So excited. Will post later about my incredible journey with NJH.
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1 ReactionFor those that are starting on Brinsupri, are you currently on MAC drugs?
Here is the summary for those who are interested:
https://connect.mayoclinic.org/discussion/brinsupri-brensocatib-webinar-summary/
Thanks, Sue, for writing this up. I listened with one ear also. I know a missed a lot and look forward to the rerun. This is what I remember from the webinar but I've read so much about this drug that's it is possible I am conflating several sources of info, so tread carefully!
The molecule was discovered in 2016 by one bio company and then sold to Insmed, who then developed it into brensocatib.
Dr. O'Donnell cited adverse events (side effects) from the NEJM article. Hyperplasia skin thickening (she showed a photo, looked like calluses on hands) she cited 1.4% on 10mg, 3% on 25mg, and 0.7% on placebo. Interestingly, periodontal issues/gingivitis was 1.4% on 10mg, 2.1% on 25mg and 2.7% on placebo. So, those on the placebo experienced more periodontal issues/gingivitis than those on Brensocatib! From my understanding, these side effects are reversible once the drug is stopped.
It takes a while to work (24 weeks) because the neutrophils are produced in the bone marrow and the body has quite a store of them. Apparently, it's a slow process to produce new ones and replace the old neutrophils in the body. It's the neutrophil elastase, an enzyme, which causes mucus to become sticky and hard to clear. More neutrophils recruited to the lungs due to infection and inflammation, therefore more neutrophil elastase and more gunk! Brensocatib reduces neutrophils elastase activity and theoretically, the gunk.
I had hoped to hear more details about specifics on brenso might improve daily life but I guess that was not measured by its parts. The QoL (quality of life) percentages were modest on the 25mg dose. Also of note, the clinical trials were run during covid times. We were all so careful then and were not exposed to cold viruses, flu etc as much as during non-covid times.
My pulmonologist recommends I start with the 25mg dose and I am moving forward through the process. I'm anxious to slow down the vicious cycle of bronchiectasis. If there are untenable side effects I will stop the drug.
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15 ReactionsI too will be starting Brinsupri on 9/5/25. Although my Mayo Jax Pulmonologist told me they had access to it and will get it for me, my Pulmonologist in Vermont (UVM) had already made the arrangements and received insurance approval 3-5 days prior to Mayo. I’m excited to try it, although Dr. O’Donnell said in a recent Webinar you may not see or feel a difference for 24 weeks or more according to the clinical trial results. But as we all know with nothing else to treat our NCFBE, it’s well worth trying for me. I will definitely keep everyone updated as time goes on.
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4 ReactionsI do my second nebulizing also before bed and I am sleeping better since I started that. It worked for me. HOWEVER, when the bladder needs me to walk down the hall I have to do a bit of clearing before putting my head back on the wedge pillow. I hope to be able to say in the near future that my sputum is "quite clear"....I feel it is a bit cloudy. Glad you shared your new schedule. I like the before bed nebulizing because it gives me a longer period of time to do other things after the A.M. treatment.
Barbara
Sue,
I am interested in knowing about any known or potential side effects. The most concerning thing that I've read about is gum/teeth issues, which I find very disturbing. Any concrete insight would be most helpful.
Thank you.
Those on the placebo had more gum periodontal issues than those on the actual drug. Go figure. Aging.
I am not an expert on this med, or its possible side effects. When the recording from the webinar comes out it has a little information on the side effects, but as @scoop pointed out, perio effects were seen just as much in the placebo group.
In my personal situation, I think a 20-25% reduction in exacerbations is not sufficient to try a brand new, expensive drug that has not been tested on people with other health issues.
I only provided the summary because I had the opportunity to hear the webinar. At this point, I won't be doing any more research on Brinsupri until there is much more history of people with RA and coronary artery disease using it safely.
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