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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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I have been on Brinsupri 25 mg for about a month. No side effects so far. I was also being treated for MAC but had to stop as they made me so sick. I will post a little later on my progress after the MAC drugs have left my body. I have a lot of hope for Brinsupri.
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1 ReactionThats good to hear, gives me hope in the future.
It took 4 months to notice a difference using Brinsupri. Now my mucus is clear and reduced significantly in volume. In summary, my symptoms are significantly reduced. Hang in there!
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6 Reactions@nickraosr Wonder if you would mind going to the Thread: Brinsupri and related C Scans if you have time to answer those questions that are applicable to you and if you are comfortable answering.
I am trying to learn all that others have to say due to it not being suggested for me, as yet, to go on the Brinsupri.
Barbara
I was able to get on Brinsupri due to the support of my pulmonologist. I participated in the brinsupri study prior to FDA approval. Medicare covered the lion share of the cost. I pay $2000 for the year which is my entire deductible, meaning I do not pay for my meds for the remaining of the year. Medicare has a program where you payoff the $2000 over 12 months.
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2 ReactionsI've been on Brinsupri for two weeks and got what I thought was a cold (which I haven't had in over 1 years). My doc said could be side effects but to continue. Symptoms were headache, sore throat, increased cough, runny nose, sneezing and fever of 100.4. Has anyone else had these symptoms and if so how often do you get them and how long do they last?
@softballqueen
It’s been great for me so please continue.
@softballqueen
Sounds like a viral bug of some sort. None of those symptoms are from Brinsupri that I know of.
And don't forget...Covid is always there somewhere.
Been on Brinsupri for about 6 weeks now and while my bronchiectasis symptoms (less sputum and slightly easier breathing) have modestly improved, I did notice some mild side effects early on like headaches and fatigue that mostly settled after the first couple weeks, so I’m curious if others are seeing similar gradual benefits or anything more noticeable over a longer stretch.
@warrendan
Very noticeable and more stability at the six month mark.