Has anyone here nebulized Budesonide/Pulmicort and tapered off?

Hi Cate, I have used budosenide intermittently for years, and have never tapered off. The inhaled version directly to the lungs is the actually a quite small dose. You could ask your pharmacist.
Sue

Thanks Sue,
What do you take it for and does it help? (I know you have bronch and MAC)
I’ve acquired Bronchospasming and excess mucus after clearing a nasty confection I was hospitalized for. I’ve been on it for six weeks and it doesn’t seem like it’s helping much.

Oh, and how long do you stay on it?
Thanks!!

I use it for exacerbations. Usually twice a day for 2 weeks, but sometimes for as long as 2 months. Most recently it was for a mild exacerbation and I only needed it for 3 days.
I also have chronic asthma and use Symbicort twice a day which contains a small amount of a steroid. I know that the common wisdom is you shouldn't use steroids with a history of MAC, but controlling my asthma has kept me much healthier. My pulmonologist recommended we try it, and it has relieved my chest heaviness and shortness of breath. Each of us is different and need to learn how to manage best.
Sue

Thanks Sue — do your exasperations ever include bronchiospasms or over reactive airways? And does the Budesonide calm those down?

Yes, my exacerbations do include bronchospasms. And actually, levalbuterol (either inhaler or neb) is better at relieving them. The beta-agonist (levalbuterol) relaxes the airways, which is what makes it a good rescue inhale. The steroid acts as an anti-inflammatory, to reduce the overall irritation in the airways.

I referred in an earlier post to using generic Symbicort (formoterol plus budosenide) to control my asthma. According to my pulmonologist this is a fairly recent protocol for managing asthma with overreactive airways or bronchospasms. It is my understanding that it doesn't work for everyone, but it has been the answer for me - one single mild exacerbation in 2022, versus three or four moderate ones in a typical year.

Do you use a beta agonist as well as budosenide?
Sue

Yes, I have been using levabuterol w my saline nebs for three plus years now. I was recently given a Levabuterol inhaler also but haven’t used it yet.

Before getting the Acinetobacter Baumanni in September and mt two hospital stays trying to clear it, I never had any of these problems with Bronchospasming or airway sensitivities or excess mucus. The protocol has been to neb 3-4 times a day w levabuterol, saline, and the Budesonide.
I’ve experimented with my 7%, my 3%, my.9% and nothing seems to really thin this excessive mucus enough. My cultures are clear - except for the MAC. Either you or someone else suggested trying Mucomyst on the other group forum.

My gut says my poor lungs are just getting too much stimulation/irritation from all the nebbing— but if I stop, then the mucus builds up. So I’m thinking maybe try going off the Budesonide to see if it makes any difference — I can always go back on.
Sorry for all the questions, It’s been four months now and I’m scared this is my permanent lung state now….

I hear you when you say "...My gut says my poor lungs are just getting too much stimulation/irritation from all the nebbing— but if I stop, then the mucus builds up..." I have wondered about that with some people who seem to have invest a lot of time in airway clearance. So, is it possible that all the irritation by the nebs is increasing mucus production? Or, is it possible that the A. Baumanii infection or the drugs that treated it has really sensitized your lungs, so your old regimen needs to be changed up to calm things down?

So, no way I would try to prescribe a routine for you, but there are other things that can help thin mucus - montelukast (Singulair), guaifenesin (Mucinex or similar - without additives), N-acetyl Cysteine or glutathione tablets/capsules (to avoid introducing any more substances into your lungs) and LOTS of water. Could you ask your doc about using one or more of these?

Also, since your doctor suggested you could go off the budosenide, why not try it? Since you are using it 3-4 times a day, just reduce by once a day every 3-4 days if you are not comfortable with "cold turkey."

Finally, nebulized levalbuterol is irritating to some people, so you could ask the doc about opening your airways with 2 puffs of the inhaler instead. This is what I do unless I am in an active asthma attack.

I'll leaves you with one final thought, from my ID doc 4 years ago "MAC is slow to grow and slow to go" - since this has been going on for years, changes and improvements come very slowly as well. Hang in there!
Sue

Saint Sue, thank you for the time you’ve put into these replies. Yes, it’s So frustrating as ALL the things I’m nebbing can have side effect of irritation….

Yes, I am planning to make a request of my doctor but wanted to accumulate ideas from the forum first as sometimes you guys have had more experience with all this than even my pulm.
I am going to try the lev inhaler tonight instead of nebbing it — did I interpret correctly that you think perhaps inhaler is less irritating than the nebbing of Levabuterol?

Yes, I find the inhaler less irritating than the neb.
Sue