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What is the prognosis for mac and bronchiectasis?

Posted by yorkieyoli @yorkieyoli, Apr 13, 2025

I was diagnosed 3 years ago with bronchiectasis and mac lung (avium). Unfortunately it wasn't taken seriously as I'm asymptomatic, and was ignored until now, where it has progressed. I'm freaking out about life span as I'm still young.
I have no idea how long you can live with mac and bronchiectasis. Please tell me it's a long time 🙁
Does anyone know what the prognosis is?
I guess I'm looking for some hope, so if you feel comfortable writing when you were diagnosed, and how you're doing, or you have any information on prognosis, I would love to hear it, as I'm basically terrified.

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pgpunch | @pgpunch | 1 day ago
In reply to @kathyjjb "@robyn13 Robyn, I had both a local doctor and a local Infectious disease doctor and the..." + (show)
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@robyn13 Robyn,
I had both a local doctor and a local Infectious disease doctor and the ID Dr prematurely put me on some very nasty antibiotics. Fortunately, I went to National Jewish in Denver (they are the leaders in MAC/BE healthcare), 2.5 weeks into my antibiotic course. NJH, after a week, told me I could go off the antibiotics and do "watchful wait". People can be on watchful wait for years, some people, especially if they nebulize and do ACT, don't ever need antibiotics! Does your doctor know your "count"? If not, that should be a huge red flag. NJH ID Dr told me they consider a count over 400 to be high. My count was 32. My last 8 counts have been 32, 0,0,0,22,8 (solid culture), 8 broth. These are very low numbers and do not require antibiotic therapy. Watch and wait is where you are followed with CT scans, sputum cultures, and general health assessments-how you feel. Please keep in mind, some people never need antibiotics. According to Dr. Daly (NJH), there is only 5 years of data assessing the likelihood if antibiotics are needed. I don't recall the number but think it was between 15 and 25%. Also, the research was not done in the US (Korea comes to mind) and Dr Daly did not know if they were nebulizing. Some studies have supported clearance without antibiotics as high as 25% while nebulizing-that said, the studies had small groups. I would highly recommend (if you're not already) that you go to a Clinic that specializes in NTM/BE infections.

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@kathyjjb Thank u for suggesting asking about counts. Do you nebulize with albuterol and 7% saline? Once or twice a day? I’m just starting the antibiotics and clearance techniques. Now have developed oral thrush. It’s a lot for me to get my head around.

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kathyjjb | @kathyjjb | 22 hours ago
In reply to @pgpunch "@kathyjjb Thank u for suggesting asking about counts. Do you nebulize with albuterol and 7% saline?..." + (show)
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@kathyjjb Thank u for suggesting asking about counts. Do you nebulize with albuterol and 7% saline? Once or twice a day? I’m just starting the antibiotics and clearance techniques. Now have developed oral thrush. It’s a lot for me to get my head around.

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@pgpunch You're welcome-so important!!

Yes, I nebulize with 7% saline, and follow with ACT via the autogenic drainage App. I have asthma and BE, so I use AirSupra prior to nebulizing. Is the thrush from Arikayce? Have you been to NJH? I assume that you have had NTM progression on your CTs and sputum counts to support the start of antibiotics.

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cjvan | @cjvan | 6 hours ago

I was told I won't die from it, but will always have it to deal with. I'm a severe case. 79 years old, had it for 2 years or more.

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pgpunch | @pgpunch | 2 hours ago
In reply to @kathyjjb "@pgpunch You're welcome-so important!! Yes, I nebulize with 7% saline, and follow with ACT via the..." + (show)
Profile picture for kathyjjb @kathyjjb

@pgpunch You're welcome-so important!!

Yes, I nebulize with 7% saline, and follow with ACT via the autogenic drainage App. I have asthma and BE, so I use AirSupra prior to nebulizing. Is the thrush from Arikayce? Have you been to NJH? I assume that you have had NTM progression on your CTs and sputum counts to support the start of antibiotics.

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@kathyjjb I am trying to get the sputum counts - only had two labs run and both were abnormal for MAC but I can't read the report well enough to determine the counts. About a year and a half ago a bronchoscopy did not result in a positive culture. I am seeing a 2nd pulmonogist at the Medical College of Gerogia - have not been to NJH yet. I also have both asthma and BE. Not sure which antibiotic is resonsible for the thrush - take azithromycin, rifampin, and ethambutol. I am questioning if i should do a "watch and wait", although the CTs over the past 2 years have shown chronic lung disease and scarring.

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