1. < MAC & Bronchiectasis
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Brinsupri (aka Brensocatib)

Posted by scoop @scoop, Aug 12 10:55am

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.

Profile picture for lilianna
lilianna | @lilianna | Oct 7 8:24am
In reply to @sueinmn "Below you can find my take on the runningonair/NTMir Webinar on Brinsupri. This talk did not..." + (show)
Profile picture for Sue, Volunteer Mentor @sueinmn

Below you can find my take on the runningonair/NTMir Webinar on Brinsupri.

This talk did not cover side effects and similar information. I will keep an eye out for that info and post it here as found.

What is my takeaway? This is an exciting development, but not a cure, nor even a full treatment for Bronchiectasis.

According to Dr O'Donnell, you still need to do everything you do today - just add this drug and hopefully reduce your exacerbations. The one year results show a 20-25% reduction in exacerbations. If you have 2 per now, you may be down to 3 every 2 years. We don't know yet if results improve over time.

The cost is high, and it is not yet clear how Medicare, Medicaid and private insurance companies will handle cost sharing.

What will I do? Watch and wait - I think in my risk/benefit world, it is too far from a sure thing yet.

Jump to this post

Thank you Sue and scoop

REPLY
Profile picture for jolenesj
jolenesj | @jolenesj | Oct 7 8:32am
In reply to @sueinmn "Below you can find my take on the runningonair/NTMir Webinar on Brinsupri. This talk did not..." + (show)
Profile picture for Sue, Volunteer Mentor @sueinmn

Below you can find my take on the runningonair/NTMir Webinar on Brinsupri.

This talk did not cover side effects and similar information. I will keep an eye out for that info and post it here as found.

What is my takeaway? This is an exciting development, but not a cure, nor even a full treatment for Bronchiectasis.

According to Dr O'Donnell, you still need to do everything you do today - just add this drug and hopefully reduce your exacerbations. The one year results show a 20-25% reduction in exacerbations. If you have 2 per now, you may be down to 3 every 2 years. We don't know yet if results improve over time.

The cost is high, and it is not yet clear how Medicare, Medicaid and private insurance companies will handle cost sharing.

What will I do? Watch and wait - I think in my risk/benefit world, it is too far from a sure thing yet.

Jump to this post

Idk exactly which type of NTM I have, but most likely it’s MAC and bronchial changes have happened so the bronchiectasis is relevant. Thanks! Jolene Jones

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1 reply
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charisscurry | @charisscurry | Oct 7 4:24pm
In reply to @crepass "The big thing is that I can deep breathe without coughing. I’m able to play ping..." + (show)
Profile picture for crepass @crepass

The big thing is that I can deep breathe without coughing. I’m able to play ping pong at a senior center without running out to cough up a lot of sputum or constantly have a cough drop at my beck and call. I’m able to eat in public, because eating could be a trigger for mucus problems.(coughing up sputum). Definitely less fatigue, can play with grandkids. ( even tho they are much more careful this year to stay away if they are sick). I ‘m pretty sure the decreased mucus is a “real” thing. Still have to do airway clearance and 7% nacl nebs 2x daily . but get up much less sputum and very light compared to the last year. still keeping my fingers crossed as it’s only been 37 days.
( i wrote this on another thread , in response to to a question… how are you feeling better?)

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@crepass are you on the 10mg or 25mg?

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crepass | @crepass | Oct 8 12:09pm

the 25mg. The pharmacist told me the 10 mg is only for compromised individuals. She then said that they try to see if people can tolerate 25 mg because of study results.

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pfists | @pfists | Oct 8 2:11pm

Hi
I kinda new on here. But I just received brinsupri today in the mail. I did ask my pulminologist if it was right for me and he agreed. I'm a little confused though because I didn't ask him anything about the dosage. I guess I assumed I would be getting the 25 mg dosage. But when I opened the box it was the 10 mg size. I will call his office and make sure this is what he requested.

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1 reply
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pacathy | @pacathy | Oct 9 7:30am
In reply to @jolenesj "Idk exactly which type of NTM I have, but most likely it’s MAC and bronchial changes..." + (show)
Profile picture for jolenesj @jolenesj

Idk exactly which type of NTM I have, but most likely it’s MAC and bronchial changes have happened so the bronchiectasis is relevant. Thanks! Jolene Jones

Jump to this post

@jolenesj Welcome to Connect! I'm sorry you need to be here, but believe you'll find it a kind and helpful group.

How are you feeling now and what led to your diagnosis? Are you being seen by a doctor well versed in bronchiectasis?
I'll post some helpful links for you.
Edit to add-did your cultures grow MAC? My CT's looked like MAc, but cultures were negative so I just have bronchiectasis.

REPLY
Profile picture for pacathy
pacathy | @pacathy | Oct 9 7:46am
In reply to @sueinmn "Below you can find my take on the runningonair/NTMir Webinar on Brinsupri. This talk did not..." + (show)
Profile picture for Sue, Volunteer Mentor @sueinmn

Below you can find my take on the runningonair/NTMir Webinar on Brinsupri.

This talk did not cover side effects and similar information. I will keep an eye out for that info and post it here as found.

What is my takeaway? This is an exciting development, but not a cure, nor even a full treatment for Bronchiectasis.

According to Dr O'Donnell, you still need to do everything you do today - just add this drug and hopefully reduce your exacerbations. The one year results show a 20-25% reduction in exacerbations. If you have 2 per now, you may be down to 3 every 2 years. We don't know yet if results improve over time.

The cost is high, and it is not yet clear how Medicare, Medicaid and private insurance companies will handle cost sharing.

What will I do? Watch and wait - I think in my risk/benefit world, it is too far from a sure thing yet.

Jump to this post

Here are some resources Sue put together.
https://connect.mayoclinic.org/discussion/resources-for-the-abcs-on-bronchiectasis-and-mac-ntm/

REPLY
Profile picture for jolenesj
jolenesj | @jolenesj | Oct 9 8:36am
In reply to @sueinmn "Below you can find my take on the runningonair/NTMir Webinar on Brinsupri. This talk did not..." + (show)
Profile picture for Sue, Volunteer Mentor @sueinmn

Below you can find my take on the runningonair/NTMir Webinar on Brinsupri.

This talk did not cover side effects and similar information. I will keep an eye out for that info and post it here as found.

What is my takeaway? This is an exciting development, but not a cure, nor even a full treatment for Bronchiectasis.

According to Dr O'Donnell, you still need to do everything you do today - just add this drug and hopefully reduce your exacerbations. The one year results show a 20-25% reduction in exacerbations. If you have 2 per now, you may be down to 3 every 2 years. We don't know yet if results improve over time.

The cost is high, and it is not yet clear how Medicare, Medicaid and private insurance companies will handle cost sharing.

What will I do? Watch and wait - I think in my risk/benefit world, it is too far from a sure thing yet.

Jump to this post

Thank you for the resource! So far I have no results on what I have. And fortunately, my CT scan just says bronchial changes in right mid and lingual areas. So I take that as the beginnings of bronchiectasis? My goal is to do what I can to preserve the health of my lungs. My doc has already said my lungs are not bad enough to treat any bacteria with antibiotics. My pulmonologist is most familiar with interstitial lung disease. I was placed with him because a radiologist noted “mild chronic intestinal lung disease” on my X-ray this summer. That started the research as to what was going on with my lungs. Within the Pulmonology group there is someone more aligned with NTM but I haven’t researched for ones more aligned with bronchiectasis.

Right now I feel fine. I only feel bad when I get a cold which always settles in the lungs, makes me cough for months and lowers my O2 SATs. Thank you so much for your reply! I hope you are doing well yourself.

REPLY
Profile picture for jolenesj
jolenesj | @jolenesj | Oct 9 8:51am
In reply to @sueinmn "Below you can find my take on the runningonair/NTMir Webinar on Brinsupri. This talk did not..." + (show)
Profile picture for Sue, Volunteer Mentor @sueinmn

Below you can find my take on the runningonair/NTMir Webinar on Brinsupri.

This talk did not cover side effects and similar information. I will keep an eye out for that info and post it here as found.

What is my takeaway? This is an exciting development, but not a cure, nor even a full treatment for Bronchiectasis.

According to Dr O'Donnell, you still need to do everything you do today - just add this drug and hopefully reduce your exacerbations. The one year results show a 20-25% reduction in exacerbations. If you have 2 per now, you may be down to 3 every 2 years. We don't know yet if results improve over time.

The cost is high, and it is not yet clear how Medicare, Medicaid and private insurance companies will handle cost sharing.

What will I do? Watch and wait - I think in my risk/benefit world, it is too far from a sure thing yet.

Jump to this post

I wanted to follow up on the resources you have sent. I am so excited to work on the manual lung clearing techniques! This is the resource I was having difficulty finding. I could find lots of information on NTM, but not on the clearing techniques. I’m also glad to have a community to join. Thank you again so much for!

REPLY
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lindabreathless | @lindabreathless | Oct 12 4:14pm
In reply to @irenea8 "I am in the same boat. No part D yet. I think without any assistance it..." + (show)
Profile picture for irenea8 @irenea8

I am in the same boat. No part D yet. I think without any assistance it will cost over $7000 a month! Does anyone know at this point which Part D plan will cover Brinsupri? Or if you were prescribed Brinsupri and it was covered can you share which plan you are on?

Jump to this post

@irenea8
I was approved for Brinsupri from my Medicare prescription plan; Cigna.
I hope this helps.

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