Tapering off Budesonide/pulmicort question

Hello @cate123456. I was able to find a couple of members who have discussed tapering so would like to invite in @jcwest211 and @sueinmn who have both commented on the topic in another discussion and who may be able to come in and support you.

Since your doctor gave you approval to taper, did he/she provide any recommended tapering schedule?

Thank you Amanda!
My doc just said I could go off it now, but no instructions.

I am also interested in others experience in taper or stopping budesonide.
@sueinmn, I failed to list Budesonide which is the last med I inhale in my airway clearance routine, Have to stop it now and then because of thrush, When I get thrush (Cotton tongue), I just stop "cold turkey" and immediately start meds for thrush.

Rainey, what are you taking Budesonide for? And does it help?
How long are you on it before you get the thrush?
Thanks, Cate

The doc at the Pulmonary Specialty Clinic ordered it 2 times a day. Along with the 7% saline, and levalbuterol. That was after trying different inhalers and (Breo and Treology). Inhalers just tightened my lungs and made it more difficult to breath. She started with just nebulizing saline and after about 2 weeks added levalbuterol and after 2 more weeks added budesonide.
I am gargling with warm saline water as I do the airway clearance with nebulized meds and also gargle and rinse my mouth with saline water after levalbuterol and after budesonide. That delays thrush, but does not prevent it. I have had thrush and have taken meds for it 3 or 4 times in the past 1w months. I may go a month without using budesonide and then I will try again. for a few weeks and have to stop. I am now off budesonide (3 days so far) and hoping that breathing will improve without to start it back again. I have not decided whether it helps breathing and decreases the amount of mucus or not.

Raney,
Thank you for that thorough and thoughtful reply.
You have so many health issues going on, and I have watched you this last year with your inspiring courage, tenacity, and strength!

Thank you for the kind words. Like everyone else I do get discouraged at times, but then I start counting my blessings. I can see, hear, talk, think, walk and participate this group and not confined to bed. I thank God everyday for all the blessings.

Taney, I love your optimism. It is important to look for the positive in every situation. So, thanks for reminding me that I have a lot to be grateful for.

A friend who has asthma just told me she has been inhaling Symbicort twice a day for years, and I looked it up and it’s got Budesonide in it along with a long acting bronchodilator. I was surprised that it’s used that often and for so long.
My pulmonologist said inhaled Budesonide stays in the lungs and doesn’t go systemic like oral steroids.

That’s a lot easier than nebulizing!

Yes, according to my pulmonologist, this is the protocol where the PRIMARY issue is long term poorly-controlled asthma, and MAC and/or bronchiectasis are secondary. I have been on the generic version for close to a year, and it has been life-changing for me.
Reduced shortness of breath, reduced feeling of "an elephant on my chest", and only a few times using nebulized levalbuterol or steroids (during excerbations.)

My daughter, who was formerly seen in the ER at least 3X a year for uncontrolled asthma attacks, has been ER free for over two years on Symbicort.

In addition, I have only been using my rescue (levalbuterol) inhaler a few times a month instead of as few times a day. I use the Symbicort before breakfast, and neb saline after breakfast.

So, as with everything else, it works for some of us.

Sue