Macrolides contraindicated by tinnitus

@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?

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.

@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?

@wsbme74 I was harmed by high doses of Azythromycin. It caused ringing in my ears, then pain. I called the doctor at that point and was told to keep taking it. Then I lost all hearing in one ear and stopped the pills. It came back, and then the other ear went deaf temporarily. I do have hearing, but with tinnitus that varies. Allergies increase it.

I have used Mupirocin which is an ointment in my nose for sinus and lung infections that tend to reoccur. This was recommended as preventative for staph infection before some surgery I had at Mayo. It works great when I need it occasionally for my lungs. I have allergies and asthma.

@scoop hello. That’s wonderful that it’s having such a positive effect on you! Both pulmonologists seem to want to wait in general until there is a pool of evidence from longer-term use, I guess. They also want to look again at whether my asthma might be contributing more than it seems - so are speaking of a biologic first, which I haven’t done. I do have hypertension (seems to be genetic) and I understand Brinsupri can raise levels. I did have the 24-hour ph impediment test for GERD (what a horrid test!) and it didn’t really show reflux. But when I get the burning sensation, antibiotics kick it back almost immediately and it’s usually accompanied by other signs of a flare-up.

@jenniferhunter thank you for sharing that. It’s really helpful. I am sorry you had to go through that with your hearing/ears. Awful. I will definitely ask my doctor about mupirocin. I am a staph carrier (like so many people, from what I now understand) so it might really be a helpful tool. Thanks!

@jenniferhunter Can you say more about how you use mupirocin and when and how long?

In the past I've used it for crusting on the side of my nose and it works well. I have chronic sinusitis in addition to BE and asthma (and tinnitus). So far, Brinsupri has made a positive impact on both BE and CRS. And perhaps asthma. It's been under 3 months so difficult to say but things in me are improved.

@scoop I don't specifically recall the instructions before my surgery when I first did the Mupiroicin. That was for 2 x day and either 5 or 10 days with a pea sized glob in each nostril as high as you can get it.

I just do this at night because it wants to flow out so I can lay down. I treat at least 2 days past when symptoms disappear. I have found that it does cause phlegm to build and then get expelled perhaps because of killing off stuff your lungs want to get rid of. I find it helpful to pull the nostril to the side to open it up and either use your pinky finger or a Q tip to get the ointment up there. I am usually treating and doing this for about 4 to 5 days.

It might be best to ask your doctor.