Hello there! There are a few of us here who have bronchiectasis (BE) and also either UC or Crohn's (or rheumatoid arthritis, which also has an association with BE). I have Crohn's -- the other kind of autoimmune inflammatory bowel disease. The Crohn's was diagnosed (firmly) in 2016 or so, years after the bronchiectasis was discovered, but it's hard to know which really came first since I had mild GI symptoms for years. The bronchiectasis was called "idiopathic", asymptomatic, and not treated until I started to develop a chronic cough. Eventually it was my Crohn's doctor at the NYU IBD Center who got me in to see Dr Addrizzo at the NYU BE-NTM clinic. The two of them share a number of patients. Once I was able to produce a sputum sample, I was also found to have MAC.
I had been on humira since 2017. The BE/NTM folks did not want me off the humira and because of the immune suppression, wanted to prevent MAC dissemination, so put me on the "Big 2" (Azithromycin and Ethambutol) plus either amikacin or a placebo (in a study). That treatment did not resolve the MAC but did cause beginning hearing loss so I was first taken off antibiotics for several months, then restarted on a lower maintenance dose since I was still coughing, and since my follow-up hearing test this past week showed continuing hearing loss, I am now off the antibiotics again. While I had been on Humira without significant infections for 9 years -- this past spring I had RSV and then pneumonia along with a couple other non-pulmonary infections. So now I am off Humira altogether to allow my immune system to catch up (so far no Crohn's flares) and off the MAC antibiotics as well.
The pulmonologists actually now think asthma may be a bigger driver of these issues for me (and a new one, or at least newly considered) than BE/MAC. I am hoping to stay off humira and stay off the BE/MAC "Big 2" (or Big 3), see if asthma treatment resolves my remaining mild symptoms, see if the hearing loss reverses or at least stabilizes, and go from there. All this will be reviewed when I see them again in July. The asthma pulmonologist says being a "complex case" has its upside which is that "we talk about you."
Having said all that -- while it can get ridiculously complicated to have these "comorbidities", all of mine are mild and I have excellent care.
YES it makes a big difference to have expert bronchiectasis care. There is now a growing list of Centers of Excellence which are certified as being up on best practices. Hopefully one of our co-BE folks here will post a link but Vanderbilt is probably a good bet.
And beyond that, if you can get your specialists talking to each other (no easy task, I know, even when, for example in my case, they "collaborate") that is important since our coexisting conditions and their meds all interact.
Please keep sharing here if you are so inclined. I, for one, am interested in how all of us with these autoimmune conditions (and asthma) work all the angles!