Treating flareups with prednisone and azithromycin

Do you take your vest when you fly?

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

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!

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.

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

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!

@rstel7272
I have recently discovered a possible problem with spiriva respimat, fluticasone propionate, and other inhalers and I am livid, to say the least. My discovery was by total accident, but the link makes sense as to why my asthma has worsened. The problem is a preservative, used in most inhalers known as benzalkonium chloride.

I found this additive only because of dry eyes. My eye doctor suggested I move to a preservative free eye drop. Once I changed to lumify preservative free, my dry eyes went completely away. I looked up the preservative in the drops I was using and found benzalkonium chloride was used. Guess what? Benzalkonium causes dry eyes and can damage the surface of the eye and cause cataracts and glaucoma! -- moving along, my research into benzalkonium advised that it was also used in inhalers, nasal inhalers, disinfectants, hiv treatments, etc. Further research states that benzalkonium chloride can cause exacerbated lung issues, and worsen asthma--!!! It also warns that asthmatic persons should steer clear of inhalers that contain benzalkonium chloride, YET they continue to expose us unwittingly by contaminating our inhalers with it!

Some may say that this information is an over reaction since the content of benzalkonium chloride in eye drops, inhalers, disinfectants, etc is small, but when you use multiple items multiple times per day, that content adds up.

I am in the process of changing my inhalers to inhalers that do not contain benzalkonium chloride. I suggest that ppl find out if they have this chemical in theirs also. Hope this helps.

@tlollini Thank you for a very educational post. I react (rashes, heavy mucus production) to an endless list of preservatives in processed food. And once those preservatives are in your body, who knows how long it takes to be rid of them? To be prescribed drugs with this preservative (the Benzalkonium chloride you mentioned) only to find out it is causing accelerated damage to the very organs the drug was designed to protect, is infuriating. Especially since patients with our types of conditions generally have hypersensitivity and immunity issues. Doctors need more education about this. Manufacturers may say there's only a "minute amount" but if it's causing damage, no amount is safe.