Eosinophilic bronchiectasis?

Posted by lvnl @lvnl, Jul 6 7:36pm

Hi all. I think in searching thru the threads there are folks here with eosinophilic bronchiectasis (BE). Any experience or good sources of info welcome! I don't know if I have this but after 3 labs over 4,months showing high eosinophils (700, 700 & most recently, 900 in early June) (over 300 is considered high) I started nosing around. My docs (NYU Bronchiectasis & Mac program) had thought allergies cuz I showed up with irritated eyes and I have new-onset wheezing + decreased PFT... But then I tested positive for one cold virus one month and a different one the next month ... so they attribute the high eosinophils to the viruses. I have never had asthma. When I started looking for info I discovered this eosinophilic bronchiectasis thing but not much info so here are my questions:
--If you have eosinophilic BE, how was it figured out? What I've seen says high blood levels of eosinophils are a marker for eosinophilic BE but apparently there can be eosinophilic anything, for ex eosinophilic gi disorders, eosinophilic kidney disorders, etc. so how do they correlate high blood levels of eos with where the inflammation is? Especially as many of us have other conditions?
--Does eosinophilic BE manifest differently from more typical (neutrophilic) BE? I've read that it can be more severe (my BE, even with MAC, is not severe). But is that the only difference?
--Any advice on what to ask the docs? My next appointment is end of this month. I will probably call the office in the next couple days and at minimum request follow-up labs to check if the level is still high. But I also want them to look deeper & I want to understand better myself what may be happening.
Many thanks all!

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bronchiectasaurus | @bronchiectasaurus | Jul 9 10:47am

I had never heard of this so just looked it up.
My goodness, so many variations of bronchiectasis!
I still know very little about my own.

When I was diagnosed by CT scan a couple months ago, I was suffering all kinds of viral infections (probably RSV and adenovirus, although they didn't bother confirming with tests) and had frequent nosebleeds as well as acute coughing. I started nebulizing saline 2x a day and also doing saline sinus rinses with a NeilMed/Guru Nanda squeeze bottle at least twice a day. Both helped a lot. I have since tapered off the sinus rinses, but the moment I have any nasal symptoms I will return to rinsing. Just mentioning these techniques in case you don't already do them. They're safe (as long as you use sterile/distilled water) and don't require a prescription.

Sue, Volunteer Mentor | @sueinmn | Jul 9 4:50pm

@lvnl My pulmonologist described eosinophilic asthma as "usually indicating an infection" which is why she tests for them. It seems sub-symptomatic pseudomonas or streptococcus can be lurking. It can also drive more frequent exacerbations.
A good question to ask your doctor would be whether you should treat exacerbations differently or more quickly than someone with neutrophilic bronchiectasis.

In China they estimate about 20% of patients have high eosinophils. I don't know how much testing the rest of the world has done.

lvnl | @lvnl | Jul 9 5:35pm

Thanks much Sue. I think you meant to refer to eosinophilic BE, not asthma, right?
I called in to docs & they had me come see the nurse practitioner on Monday. I've tested negative for any of the dozen or so viruses they can swab for. They retested for blood eosinophils which continue to climb. If no new infection shows up in the sputum I gave them, I'm going to get an allergist or immunologist referral, whoever they like to team up with (at NYU BE/MAC program). Meanwhile they put me on a second short course of Prednisone because I'm wheezing. I'm not happy with the wheezing or the Prednisone! So hopefully we figure out what's going on.
Good question you suggested for the docs. I've found after my almost-a-year with the NYU team that when I reach out they are responsive and they have paid close attention to follow up unlike a lot of docs these days who are way too overloaded.