What's your experience wtih Brinsupr (brensocatib)?
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?
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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@softballqueen
That is the way all vaccines work. Some vaccines are highly effective (like measles) and others are kind of hit or miss (like flu). There are many variables with viruses and vaccinations work by lessening the likelihood of serious illness or complications and they all depend on herd immunity to be their most effective. Thus, the importance of everyone getting vaccinated.
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1 Reaction@1fancydancear
FYI: Burkholderia are gram-negative bacteria, while NTM are acid-fast bacteria. Burkholderia is not the same as NTM.
I am on my first day of it reluctantly and anxious to hear experiences of others.
I've been on it for 3 weeks and honestly feel like I am coughing and coughing up more. I will continue because I was told it could take 3-6 months to notice a change.
@softballqueen
It seems there's a bit of a clean out period. Every week seemed to change for me. Sometimes worse sometimes better.
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3 Reactions@scoop
I noticed that also. The up and down with it all really took quite a while, but I seem to be in a steady state now after about 8 months on Brinsupri. I am so glad I stuck with it because my lungs have been so much better for it. I have not had my yearly CT scan yet but when it is time I'll be interested to see if there is any change- hopefully for the better!
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2 ReactionsWould like to hear from any elderly people on Brinsupri? Maybe 75+? Just thinking that older people may have more severe disease, or certainly longer standing disease, and more challenges than the younger folks.
I’m 75 and been on Brinsupri 3 months. Game changer for me. I only cough when doing clearance and gunk is so much easier to get up. I’ve had no side effects and feel GREAT!
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3 Reactions@ursala7 I'm 72 with a 10-year history of MAC and 25-year history of bronchiectasis. I've been on the medication for one month and although I've had no side effects I have not seen significant changes to my symptoms. I have heard from many that it can take to eight months so I will continue.
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1 Reaction@ssieber That is so wonderful to hear. I would take it in a heartbeat. I am having difficulty getting a pulmonologist that knows about our disease to see me. I may have to pick a random pulmo from the referral list primary gave me, and that kind of defeats the purpose. Primary doesn't know diddly.
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