1. < MAC & Bronchiectasis

Treating flareups with prednisone and azithromycin

Posted by wsbme74 @wsbme74, Jul 10, 2023

Hello.
I have broncheictasis (newly-diagnosed) and asthma. I have a local pulmonologist whom I see regularly (though newly) who has some background with CF and Bronchiectasis, though not a ton. And a more specialized pulmonologist in Boston, who I will see for clinic maybe 2x per year. He said to try and avoid prednisone when I can with flareups but to treat with azithromycin (5 days on; 5 days off; another 5 days on if needed). Whereas the local pulmonologist said she would treat with both prednisone and azithromycin (no MAC now).
I am wondering if there is a "standard" for Bronchiectasis flareups and are both meds usually prescribed?

Thanks.

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tbg | @tbg | Jul 15, 2023
In reply to @sueinmn "@wsbme74 Hello - I was out of touch for a few days visiting family, and just..." + (show)
@sueinmn

@wsbme74 Hello - I was out of touch for a few days visiting family, and just saw your post - yes, according to both my pulmonologist and my recently retired PCP whose practice included many lung patients, the Zithro/Prednisone route can be the best for some of us. I also have asthma with bronchiectasis, and was previously treated for MAC.
I actually use Symbicort (which contains a tiny steroid dose with a long-acting beta agonist) as my daily inhaler. It has reduced my exacerbations over the past year from every 4-5 months to ZERO. It has reduced my Levalbuterol nebs for asthma attacks from at least once a week to TWO in a year. It has reduces my Levalbuterol rescue inhaler use from multiple times a day to once or twice a month.
For 2 1/2 years before that, I had on hand a 7 day steroid packs plus a 5 day Azithromycin pack. I was using them 2-3 times a year.
When I see my Pulmonologist next month, she will need to renew these because they have expired.

Full disclosure - I have also needed to use steroids for 10-30 days to calm inflammatory flares in my body several times as well.

I guess my point is that different things work for different people. This regimen has worked for me for almost 4 years without causing MAC to flare up. And my Dexa says it hasn't affected my bones either.

Sue

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Do you take your vest when you fly?

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Jul 15, 2023
In reply to @tbg "Do you take your vest when you fly?" + (show)
@tbg

Do you take your vest when you fly?

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I don't use a vest, just a nebulizer. Maybe you can ask someone in the discussion about vests:
https://connect.mayoclinic.org/discussion/using-the-smartvest/
Sue

REPLY
wsbme74 | @wsbme74 | Jul 19, 2023
In reply to @sueinmn "@wsbme74 Hello - I was out of touch for a few days visiting family, and just..." + (show)
@sueinmn

@wsbme74 Hello - I was out of touch for a few days visiting family, and just saw your post - yes, according to both my pulmonologist and my recently retired PCP whose practice included many lung patients, the Zithro/Prednisone route can be the best for some of us. I also have asthma with bronchiectasis, and was previously treated for MAC.
I actually use Symbicort (which contains a tiny steroid dose with a long-acting beta agonist) as my daily inhaler. It has reduced my exacerbations over the past year from every 4-5 months to ZERO. It has reduced my Levalbuterol nebs for asthma attacks from at least once a week to TWO in a year. It has reduces my Levalbuterol rescue inhaler use from multiple times a day to once or twice a month.
For 2 1/2 years before that, I had on hand a 7 day steroid packs plus a 5 day Azithromycin pack. I was using them 2-3 times a year.
When I see my Pulmonologist next month, she will need to renew these because they have expired.

Full disclosure - I have also needed to use steroids for 10-30 days to calm inflammatory flares in my body several times as well.

I guess my point is that different things work for different people. This regimen has worked for me for almost 4 years without causing MAC to flare up. And my Dexa says it hasn't affected my bones either.

Sue

Jump to this post

Hi, Sue.
Thanks so much for going through this so thoroughly. I really appreciate it and it's so helpful. That is wonderful how much you have been helped by Symbicort. I am now on it, twice a day. Though until recently, I didn't need any daily maintenance. Things change.

With this regimen, do you usually nebulize with saline 1x or 2x per day? Thanks!

REPLY
1 reply
scoop | @scoop | Jul 19, 2023

This might be crazy illogical thinking but one reason I avoid azithromycin for maintenance (3x week) is azithromycin is one of the medications frequently used to treat NTM/MAC. Right now, no NTM/MAC etc show up on my cultures, working diligently to keep it that way with wisdom from the group. @wsbme74 I guess you could try azithro to see how it helps with inflammation. Before you begin you might want to get a culture to make sure your mucus is susceptible and not resistant to azithro.

Regarding oral or inhaled steroids, it seems taking anything that decreases the natural immune system may make one less able to fight off bacteria, fungus etc. An oral prednisone dose when necessary is a lifesaver as are antibiotics. My challenge is finding the smallest effective dose of inhaled corticosteroid that keeps asthma/bronchiectasis exacerbations to a minimum.

REPLY
1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Jul 19, 2023
In reply to @wsbme74 "Hi, Sue. Thanks so much for going through this so thoroughly. I really appreciate it and..." + (show)
@wsbme74

Hi, Sue.
Thanks so much for going through this so thoroughly. I really appreciate it and it's so helpful. That is wonderful how much you have been helped by Symbicort. I am now on it, twice a day. Though until recently, I didn't need any daily maintenance. Things change.

With this regimen, do you usually nebulize with saline 1x or 2x per day? Thanks!

Jump to this post

I'll be really honest - I nebulize 3-4 times a week, saline only, at this time, a while after my AM Symbicort. This is my usual warm weather routine - along with daily Aerobika, Symbicort & Mucinex. Sometimes when air quality is bad, or I travel, I go to daily for a bit.

Here is my logic - when I do airway clearance the day AFTER I neb saline, my mucus still tastes salty - and even sometimes that day after that. So I figure it is still down there, doing its job, and as long as I still bring junk up every day and feel healthy, it works for me.

If I (or anyone around me) gets a cold or other respiratory bug, I go to once a day. If I start feeling real congestion, or I wheeze, I jump to either budosenide or duoneb nebs plus saline twice a day (happened 4 times since December 2019.) If that is not enough, I have a standing order for oral prednisone (have only used it twice since Dec 2019.) December 2019 is when I switched from the Big-3 to 7% saline, even though I still had positive cultures. My last 2 CT's showed everything stable.

I am waiting for a call from my pulmonologist's office to see if we are going to do a sputum culture before my September appointment, or wait to see what my CT looks like.

My philosophy is that when we live with a life long condition, we need only to make enough adjustments and concessions in our life to stay as healthy as we can while still having a full life. Every person is at a different point in their condition, has different levels of comfort with their regimen, and different risk tolerance. I cannot see me spending over an hour a day nebbing and doing airway clearance, as I did when my MAC was acute, in addition to the 30 plus minutes of stretching I do every day to keep my pain managed, and the 30-40 minutes I (try to) spend walking every day, So I adapt - often my weeding and hauling in the garden replaces at least some walking, the bending and reaching help keep me limber, and help bring up the junk in my lungs! And I get time in nature.

What is your airway clearance routine like?
Sue

REPLY
wsbme74 | @wsbme74 | Jul 20, 2023
In reply to @scoop "This might be crazy illogical thinking but one reason I avoid azithromycin for maintenance (3x week)..." + (show)
@scoop

This might be crazy illogical thinking but one reason I avoid azithromycin for maintenance (3x week) is azithromycin is one of the medications frequently used to treat NTM/MAC. Right now, no NTM/MAC etc show up on my cultures, working diligently to keep it that way with wisdom from the group. @wsbme74 I guess you could try azithro to see how it helps with inflammation. Before you begin you might want to get a culture to make sure your mucus is susceptible and not resistant to azithro.

Regarding oral or inhaled steroids, it seems taking anything that decreases the natural immune system may make one less able to fight off bacteria, fungus etc. An oral prednisone dose when necessary is a lifesaver as are antibiotics. My challenge is finding the smallest effective dose of inhaled corticosteroid that keeps asthma/bronchiectasis exacerbations to a minimum.

Jump to this post

Thank you! This would just be for flare-ups that I would be prescribed the azithromycin. However, it's puzzling that my 2 pulmonologists - both of whom work with Bronchiectasis patients - are okay with that being on standby. Basically any pulmonologist who works with NTM (which, sadly, we stand a good chance of picking up at some point) seem to actively steer broncheictasis-only patients away from azithromycin when they can. The last thing they want to have happen is for a patient to develop NTM and have a resistance to one of the only tools in their toolbox! I need to question them more on this.
I am also trying to go down in dosage on my inhaled corticosteroids for the same reason.
Thank you!

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