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
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Coverage has been approved by my Medicare Part D insurance plan. I should have the pills later this week. Hoping it's beneficial.
OK, thanks for clarifying the indication for Brinsupri. Best of luck!
I started Brinsupri at the end of august. Seeing my pulmonologist in 2 weeks. Since I read that possible liver side effects, I will ask about LFTs( liver function tests).
Where did you read that it could affect liver function? I’ve watched two different webinars on Brinsupri, from two different Doctors (O’Donnell & Kamensky) and both never said anything about affecting the liver. In fact one (Kamensky) said no bloodwork needed. Both of these Dr.’s are specialists in Bronchiectasis.
I listened to the one by O'Donnell yesterday and like you, I heard no talk about liver side effects or need for following blood work!
I'm fairly certain that I have eosinophilic BE and Brensocatib won't work for me. I believe 20-30% of BE's are eosinophilic not neutrophilic. Maybe this is another discussion?
My BE seems to be that phenotype with high eosinophils. Nonetheless, until a DDP1 type drug comes out for us, I will pursue Brinsupri, which my doctor has recommended for me. My eosinophils are out of the normal range (600) but I've read others have numbers in the thousands and tens of thousands. They have come down considerably with allergy shots (used to be 2000). A daily allegra has also been very helpful in decreasing lung mucus, which has been draining from my sinuses.
WOW! 2000. I'm currently at 540. Singular was like a miracle drug for me until I started getting side effects-nausea. That was 20 years ago, long before I ever heard of BE I just read a study that inhaled corticosteroids (IC) helped those with eosinophil levels over 300. I understand the pitfalls of IC and Singular, but it leads me to ask, what is the worse of 2 evils. At this point, I am using an IC-which both my local and NJH doctor support. It's not ideal but I need it. My local pulmonologist wrote a script for 5 mg singular (half dose) to take at night but back in May, while still testing positive for MABC, my NJH doctor did not want me to take. The thing is, the Singular could eliminate my need for IC's. I'm tuning into the NJH NTM conference this weekend, so hopefully there will be some discussion on this. Last night, I listened to an NTM and BE NJH Research and Treatment Update Video dated 3/25/2022 sponsored by Insmed, and it was very interesting. I did not get the takeaway that I would benefit from the Brinsupri (during neutrophillic vs eosinophilic BE overview), but a lot of Brinsupri research has happened since 2022. Good luck and thank you for your reply. I have very mild rhinitis, but I'm going to start back up on Allegra-at least for now-see if it helps with my inflammation.
Singulair worked great for me for about one week until I experienced heaviness in my body, as if it was hard to get out of a chair. Maybe that’s what depression feels like?It’s a rare side effect sadly, anyway, I had to discontinue.
Regarding inhaled steroids, I use Symbicort two puffs twice a day and when I get wheezy, I use an albuterol puffer. I take a lot of steps to avoid environmental triggers for asthma and allergies and NTM. HEPA Air Purifiers run in every room along with air conditioning. And a dehumidifier in the basement. Of course, twice a day airway clearance!
I wonder about the injectable biologics.
Close Follow up with pulmonary as I embark on brinsupri. Based on the webinar, I listened to yesterday if it’s going to work, I should notice symptom reduction within six weeks. I’m willing to take that risk.
I have listened to two webinars on Brinsupri so far. But it is still not clear to me what symptoms we might notice improvement in after some time. Do you know? It does not seem clear what the actual benefits are that we might actually notice or experience. The main thing I heard early on was reduced exacerbations.