How do you handle a flare up or exacerbation?

@cholash Usually, unless you have severe symptoms, antibioyics are not prescribed until the sputum culture comes back. the last step is sensitivity testing to determine which ones to prescribe. this takes 6-8 weeks, but mycobacteria are very slow-growing, so waiting is not risky.

Sometimes, even i f the culture is positive, if the infection load is low and you have few symptoms, they may not start antibiotics right away. There is a protocol called watch and wait, where you do daily airway clearance and submit frequent sputum specimens for culture to see if you can reduce or eliminate the infection without drugs.

are you doing airway clearance?

@sueinmn wow , that’s all interesting , and I have so many questions . First, so for a BE exacerbation , no antibiotics for 6-8wks, to wait on testing results ?
Typically , if I had increased mucus , color change, increased cough & extreme fatigue , my pulmonologist didn’t test, but started me an antibiotics , claiming I needed to treat it early . For the most part , that’s always seemed to work. I was tested in Tyler for Mac , but was negative . I understand needing to wait on Mac confirmation for treatment , but can you wait that long to start antibiotics for run of the mill viruses? Yes, I do 7 % saline nebs & postural drainage . Tomorrow my sputum will be sent to Tyler , but I’m supposed to call my local pulmonologist . If you are having an exacerbation , do you not start antibiotics ? ,

@cholash I didn't know you were talking about an acute exacerbation, I thought they were specifically testing for MAC.

Keep in mind that most exacerbations are viral, and antibiotics do NOTHING to cure them, and there is a danger of overprescribing, so many docs prefer to try to manage illnesses without them. My pulmonologist believes they should only be used if there is a verified bacterial or pneumococcal infection.

For an exacerbation that comes on suddenly, my emergency treatment plan is to double saline nebs and airway clearance. If no improvement in 48 hours, add budesonide neb 2x a day and double asthma meds. 48 more hours if no improvement, start a 14 day course of oral prednisone and call my doctor. She decides whether to start antibiotics at that point and has me submit sputum samples just in case MAC is back.

Let me add that I finished antibiotics for MAC in December 2019, and they thoroughly wiped me out, so we avoid them if possible. I have been negative for MAC since 2020, and most of my exacerbations kick my asthma into overdrive. I have only had to move to antibiotics 3 times in six years, and once was after Covid.

How frequently do you have exacerbations?

@sueinmn than you so much for your detailed information . I was diagnosed around 6 yrs ago. For 1 1/2 yrs prior , I had chronic lung infections . Antibiotics , steroids, repeat . Many specialists , and no one knew what was causing everything . Was eventually referred to National Jewish . There I was diagnosed with an Inlet Patch ( IP) = gastric tissue in my upper esophagus . The IP was causing acids to be secreted into my airways . The IP was removed , but caused Bronchiectasis. Since IP removal , I’ve had about 1-2 exacerbations per year . Usually 10 day antibiotics plus Medrol dose pack . Last yr I caught the flu which turned into pneumonia , so more antibiotics and steroids than I normally take were Rx’d.
I have a call into UT Tyler . This is my first specimen to send that unfortunately was collected on a Sunday . I will have had it 24 hrs before sending . I couldn’t get a person to ask if my specimen will still be viable , which is really annoying , so my husband has run my specimen to fed ex to get it shipped . They are supposed to call me back , but who knows when that will be. Do you think the specimen will still be good?

@sueinmn wow , that’s all interesting , and I have so many questions . First, so for a BE exacerbation , no antibiotics for 6-8wks, to wait on testing results ?
Typically , if I had increased mucus , color change, increased cough & extreme fatigue , my pulmonologist didn’t test, but started me an antibiotics , claiming I needed to treat it early . For the most part , that’s always seemed to work. I was tested in Tyler for Mac , but was negative . I understand needing to wait on Mac confirmation for treatment , but can you wait that long to start antibiotics for run of the mill viruses? Yes, I do 7 % saline nebs & postural drainage . Tomorrow my sputum will be sent to Tyler , but I’m supposed to call my local pulmonologist . If you are having an exacerbation , do you not start antibiotics ? ,

@cholash Jumping in here to say that often BE exacerbations begin as viruses, which can turn into bacterial exacerbations. If you listen to the various BE updates from MD experts they discuss when to treat. They run through a list of approximately 7 symptoms and if there are 3 of those symptoms they treat as long as there has been a sputum sample dropped off before beginning abx.

Most of us are colonized and these colonies get out of control (often spawned by viruses) and start causing symptoms (increased phlegm, increased cough, aches, malaise etc). To ignore these symptoms invites worse outcomes. I agree with @sueinmn that efforts to clear lungs should be stepped up in these situations. For example, instead of clearance 2x, go up to 3-4 times a day. If you do not feel better after a couple of days of increased routine, doctor should be contacted for possible treatment. It's best to avoid abx if possible but not at the cost of decreasing lung health.

@scoop thanks so much for all your info . I guess that pretty much sums up what my doctor has been doing . If she suspects a secondary infection , the antibiotics start . So far my BE has stayed mild , but I do understand the concern with not building up resistance . I’ve only sent in my second sputum sample now, so I guess time will tell what all may be brewing . Lung tissue colonization & understanding is where my knowledge is weak…trying to learn and understand more about it . Do you have a link to the 7 symptoms you mentioned ?

@cholash

Early Warning Signs of an Exacerbation and “Red flags”

If 3 or more of the following areas become worse for you within 48 hours, you are having an exacerbation:
Cough
Changes in the amount of mucus coughed up and/or texture
Coughed up mucus is yellow/green
Feelings of shortness of breath and/or ability to handle exercise
Feeling tired
Coughing up blood
https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Exacerbations

@scoop thank you so much . That’s all great information , and I really appreciate you taking the time to help educate me . I read the info from the link , and it said most exacerbations are bacterial . My pulmonologist has never tested my sputum , just prescribed azythromicyn. I’m now getting another set of eyes at UT Tyler , who are requesting sputum samples to be sent to them when I’m sick . I’m about 2 1/2 hrs from away , so they can’t be my primary care . They are a center of excellence . I guess my question is, if the sputum testing results take several weeks, how are specific antibiotics recommended for the acute infection?