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Remission

MAC & Bronchiectasis | Last Active: Apr 19, 2023 | Replies (34)

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@sueinmn

In addition to suppressing inflammatory response, steroids suppress the body's immune response, so if you have an active infection, antibiotics may not be as effective.

According to my ID doc, the amount of steroid in a nasal spray has an insignificant effect because it is small & localized. He said that is the reason it is safe for continuous use.

When it comes to oral or inhaled steroids, as for an asthma exacerbation or other inflammatory flare, there is a tradeoff. Yes, the immune response is blunted, but if the inflammation going on in the body is bad enough to affect daily life, it may be needed.

For example, if I use a 3x daily inhaler with the smallest dose of corticosteroid plus a long-acting beta-agonist, my asthma is well-controlled. The cumulative dose is still quite small. If I do not use it, I have an asthma exacerbation about every 3-4 months that requires 2 weeks of a higher-dose nebulized steroid. The alternative is a descent into an uncontrolled asthma attack, followed by a bout of bronchitis. So, breathing better and avoiding exacerbation is, for me, worth the risk of reenergizing any MAC hiding in my lungs. I try to keep that fire "tamped down" by continuing to use 7% saline nebs plus airway clearance.

I also have occasional full-on inflammatory episodes that attack my joints during/after other illness. Sometimes the only way out is a short course of oral steroids. Again, a trade-off between curling up in a ball or taking one or two weeks of steroids - and I double up nebbing and airway clearance.

So far, this approach has worked for me for 34 months without MAC or pseudomonas taking hold again.

Living with MAC and bronchiectasis has become a balancing act for many of us. Only you and your doctors can decide, based on all that is going on with your body, how and when it is okay to use steroids. Do you use a long-term nebulized or inhaled steroid?
Sue

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Replies to "In addition to suppressing inflammatory response, steroids suppress the body's immune response, so if you have..."

I’ve been on symbicort 100/6 mcg since early last spring. It was prescribed by one of my respirologists but the other one said I should try to cut down from 2 puffs twice a day to 1 puff twice a day and go from there because I should be on the minimum dose that sustains me.
I was on a nasal spray but i kept getting nose bleeds so I stopped. I’m not sure it makes any difference.
I’ve never been on oral steroids.

Thanks for sharing your experience!