Brinsupri follow-up

I’ve been in it for a month. I can’t tell if I am noticing a difference yet. I’m also more vigilant about airway clearance and twice daily neb/ saline treatments so it’s hard to tell. But I seem to be more tired and more gunky. Not sure what to make of it

@sueinmn I’m not asking for a treatment plan . My question was have others experienced an URI shortly after beginning treatment & if so is it like an old or more serious. I was only asking for experiences.

@cdward1028 I posted my experience with Brinsupri I believe somewhere in this thread. I’ll summarize: after about 3 weeks on Brinsupri I developed increased phlegm, increased cough and did not feel well. Dropped off a sputum sample which showed inflammation (polys 4+) but no specific infection. No NTM, no pseudo. Pulmonary decided to treat me with abx and I’m feeling better. From my understanding it takes several months for Brinsupri to stabilize in your system. Does this help?

@scoop
Glad you are feeling better. Wondering why you were treated with antibiotics if nothing cultured out? Could have been just a viral thing?

@scoop
What is your conclusion or do you have one? Do you think the Brinsupri caused the issue? And what is polys 4+?

I thought it might be helpful to share where I am after starting the third month on Brinsupri. I started on 8/29. Started feeling positive effects during that first month.(as reported by others on this site). I still have lots of germy Grandchildren who I love and share viruses with! I developed a fever on Oct 9 which progressed to increased mucus, lo grade fever and sore throat and coughing. Did not despair, kept doing the airway clearance (upped to 3x daily) with 7% NS nebs. Took tylenol. and on October 14 sent in a sputum and a note to my pulmonologist asking if I may have an exacerbation. October 16, sputum grew moraxella catarrhalis, pulmonologist prescribed 10 days of antibiotic. At the end of 10 days my mucus levels were back to pre-exacerbation with no cough. I must say, this is the fastest I have recovered from an exacerbation in the last 2 years. Still hopeful about brinsupri. Also got a "Save the date" note from TAF (the assistance fund), for 2026 reenrollment December 3-19 at 12pm ET. (and a Pin #). Hope everyone stays well and wears a mask.

@cwal @irenea8 I'll do my best to answer these questions. Pulmonary treats the patient and not only the sputum culture. In other words, increased cough, increased and darkening sputum feeling crappy for well over a week, all these symptoms drive the decision to treat. My sputum culture showed: excellent specimen quality (no epithelial cells), increased polys means strong inflammatory response (lots of neutrophils), rare mixed bacteria (nothing dominant), no specific pathogen isolated, low level infection likely. Also waiting for tests on fungi and NTM (which take longer).

Could it be a viral thing? Yes. Often exacerbations start out as triggered by some virus. Then, it progresses to bacterial due to weaknesses in my lungs (bronchiectasis). Sometimes I can fight it off and sometimes not.

Do you think the Brinsupri caused the issue? I sort of doubt it. If anything the brinsupri helped as recovered more quickly than usual and did not get as sick.

@scoop
Good point about progression to bacterial weakness due to the status of our lungs since bacteria is always hanging out somewhere close by. I was only thinking in "black and white" as in it was bacterial or not. Like you, I doubt Brinsupri is the culprit.

I have been on brinsupri for a month now. I would say my blood pressure is up a little- I am a low blood pressure person now it’s 125/130 in the morning, my cough sounds a little different at PM - not always dry but with the sensation that there is something there to expel.

@scoop hey scoop glad you are feeling better. I had a similar issue. I’ve been on Brinsupri since 9/5. Did real well until 10/16. That’s the day I got my Covid & Flu vaccination. On 10/18 I took a trip to my local hospital ER, with more sob, body aches, fatigue, and more phlegm, and chest tightness. I had blood work, chest x-ray done and it was determined that my sodium in blood was low 126, (normal is 136-146) its a condition known as Hyponatremia. Now I’ve had this before, But I’m convinced that the Covid or flu vaccine triggered this condition, so is my pcp. Just 2-3 weeks prior my Sodium levels were 134-135, and had been that for the previous 3 months. I’ve been told previously that hyponatremia is common in people with lung disease. Nevertheless the treatment is fluid restriction and salt tablets, and furosemide. I know that there is alot of controversy over the Covid vaccine, in fact Florida is really initiating anti vaccine rhetoric, although it is optional to residents, and to me it seems evidence appears to be growing that maybe this vaccine isn’t as safe & effective as we’ve been told. Anyway it leaves us with an even tougher decision!! Do we get the vaccine or not??? Thank you for listening sorry so long. Also I did file a complaint with the FDA, my pcp says nothing will be done with it, it’s just another data point for them.