Has anyone had an exacerbation while on Brinsupri?

@deanna14
My pulmonary said it was ok every now and then, but check with yours since they know you as a patient. I reserve it for infrequent use (if I am a house guest etc).

@deanna14 I find throat lozenges such as Sootheez or other old fashioned cough drops high in pectin help with my dry cough. These were recommended by the Speech Therapist.
Maybe you could try those?

@sueinmn thank you!

@deanna14 I started 10mg on 9/25. Since then I’ve been sick 3 times . In fairness to Brinsupri , I started out wondering if I could now be Super Woman . Last December I took my grandkids to a kids Christmas musical . No mask . Ended up sick after it . I’m currently being treated for what is believed to be a sinus infection .
End of last year I made I trip to UT Tyler for a consult . The doctor I saw was involved with the Brinsupri clinical trials . I saw her again last week .
My take aways from that visit :
1) Try the 25mg. During the trials , she said “ they only used 25 mg, and they could tell who was on Brinsupri & who was on the placebo”. I found that really interesting . So I just bumped my dose up to 25mg last week, hoping to get better results .
2) She said Brinsupri won’t necessarily keep you from getting sick when exposed to a virus , etc, but it will slow the disease progression .
3) Continue daily nebulized 7 % sodium chloride & airway clearance
So now I’m on the 25, and I’m curious to see how it goes.

@cholash I hope it brings you great results! Interesting speaking to a doctor who was connected to the drug trials.

@deanna14. I have been on for 8 month, 10mg. For first. 3 months then 25 mg. I had a doozie of a flare in early July but I came out of it faster, ie instead of 4 weeks. I was out in 2. I was told not to take anything that would suppress the cough so I increase my water and suck on pectin drops (ludens). Take care

@bubbie2 thank you! Wishing you good health!

@sueinmn thank you for your response! I will try the cough drops.

Yes, I have been on Brinsupri 25mg since February, and have had a wonderful five months of not coughing and decreased sputum that only came up when I nebulized and huff coughed every day. Then, at the beginning of July, I slowly started coughing a little bit more, and sputum was coming up along with it. Nothing drastic, just a slow progression. Then I woke up with my lungs hit hard. Compromised breathing, heavy coughing, and a whole lot of green sputum. My Pulmonologist put me on doxycycline and prednisone for a week. (he didn’t want to put me on azithromycin without knowing what we’re dealing with so as not to create any more antibiotic resistance) It wouldn’t stop. I went to urgent care, and continued the doxycycline and three more days of prednisone. After a full 21 days of misery, the coughing has finally subsided, and the green sputum is only once or twice a day. Sputum samples show moderate pseudomonas growth. (I know I also have MAC and abscessus in there somewhere too as they have been positive in the past) So… not sure what role Brinsupri played is in all of this, but curious how the month of July would’ve gone without it. Praying I will be back to feeling healthy again for an extended period of time. It really was wonderful while it lasted.

Hello. I have been on Brinsupri for four months now and have had no exacerbations (I had four last year).
So far, this med has worked great for me. No more coughing, and very little phlegm. I caught mac back in 2005 and fought it hard over the years. I have had mac negative results since 2023. I have had several bouts with fungal infections though. I have a feeling I caught those at several people's homes that I stayed at. I could smell mustiness in the air. I have since avoided those places. I kept a travel diary and noticed a correlation of becoming ill after those stays. I have learned that one simple round of antibiotics usually doesn't get rid of these infections.