Macrolides contraindicated by tinnitus

Posted by wsbme74 @wsbme74, 7 hours ago

Hi. My pulmonologist wanted to put me on daily or 5x per week macrolide treatment as she feels I am having too many flare-ups.
However, because I already have some tinnitus, she does not want to pursue the treatment. I am disappointed and wonder if others have contended with this reason for not proceeding?

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Sue, Volunteer Mentor | @sueinmn | 5 hours ago

@wsbme74 Can you tell us what infection(s) have been identified as the cause of your flare ups? Have you been diagnosed with MAC/NTM or Pseudomonas? Do you do daily airway clearance with saline to try to lower the number of exacerbations?
I remember previously you asked about an ID doc - have you consulted one yet?

wsbme74 | @wsbme74 | 4 hours ago

Hi, Sue.
Thanks.
I don’t have an ID doctor but I confer with a Boston-based Bronchiectasis specialist (my regular pulmonologist is in Maine) and could possibly see an ID doctor there. Both doctors feel I am getting exacerbations too often (I have tested positive for klebsiella and staph aureus - sp? and antibiotics kicked those down. Essentially, I am needing antibiotics about every 3 months based on rapidly-developing symptoms, which they feel is too much. I do saline (7%) and the Aerobika 2x per day, plus Symbicort (I also have asthma). I do try to do “all of the things” in terms of management. I don’t garden, anymore. I purify all my water; I mask basically everywhere (a real drag and I really miss indoor dining). But I get more than my share of flareups (sudden burning chest sensation, increased and discolored sputum, low-grade fever, reduced energy - or crushing fatigue). Both pulmonologists are still mostly adopting a wait and see for Brinsupri. But I am 51 and they are also concerned about preserving as much of my lung function as they can. So, not being able to take Macrolides is disappointing.

scoop | @scoop | 2 hours ago

In reply to @wsbme74 "Hi, Sue. Thanks. I don’t have an ID doctor but I confer with a Boston-based Bronchiectasis..." + (show)

@wsbme74 Curious why they are waiting on Brinsupri? Based on frequent exacerbations you seem a likely candidate. I started it in mid-September; breathing, energy, sleep all much improved. I also have a history of frequent exacerbations but my sputum fails to grow anything treatable (normal flora etc).

The burning sensation in your chest -- might that be reflux/gerd? Unmanaged reflux can certainly cause frequent flares. With the asthma do you also have year round allergies?