MAC and steroids

@sharon842 Welcome to Mayo Connect - I am amazed to see the reach our little group has. While you are correct that most doctors do not use corticosteroids in patients with MAC, we are all different and our medications may need to be as well.

For example, I have long-term asthma, bronchiectasis & have been treated for MAC (the jury is out on whether it is still there - I stopped the antibiotics nearly 4 years ago while still positive.) I have been using mucus thinners, 7% saline and airway clearance to manage ever since. Of course, early in my treatment, my inhaled steroid was taken away cold turkey. Boy was I an unhappy wheezer!

Without a steroid, it was impossible to keep my asthma controlled, and I was having exacerbations of asthma/cough/bronchitis cycles that led to high doses of nebulized and oral steroids and courses of antibiotics. In between, I had constant chest tightness and shortness of breath that seriously limited my life. Finally, my pulmonologist said "Your lung CT is stable. Managing your asthma is task #1 now." I started using a Symbicort inhaler (budosenide & formoterol) and got my life back.

Recently, during the Q&A at the Annual Bronchiectasis Conference, one of the docs said that sometimes a steroid is needed. Take a look at this recording:

Hi Sue
Many thanks for your reply and nice to 'meet' you! I am a 43 year old woman. After a series of lingering infections over the last few years that decreasingly respond to the ABs my GP can prescribe, MAC was found in one of my sputum samples last year.
No treatment was started at the time as I was relatively well. I think they (my hospital consultant) don't consider it a diagnosis until MAC is found more than once.
When I first started getting symptoms some years ago, my GP treated me as having asthma, which is why I ended up with a steroid inhaler. I have never had an asthma attack. I still don't consider my asthma to be very bad - I will get a bit wheezy if I visit friends with pets etc, but it's not a daily concern. I try to wean myself off the inhaler slowly, but so far I can't go more than 2 days without it. I get a mild burning sensation in my lungs which warns me to take it again. And then whenever I get a virus/flare up I have to go back to taking it daily.
I currently manage my lungs with daily nebulizing 7% saline, and I have an Aerobika device for extra clearance if I need it. I am not on any ABs at the moment, although I am unwell again. In anticipation of speaking to my consultant I thought I would find out the situation with steroids. I think MAC is probably massively under-diagnosed here in the UK, and consequently our experts may not be the most well informed.