Remission

Nan, have you also been diagnosed with IPF/PF?

Hello & welcome to Mayo Connect, I see that you have been a member for a while, but this is the first time you have posted a message. I hope I can answer sensibly, because my asthma has been an unsolved puzzle for over 30 years.

I should explain that in addition to asthma I have allergies, bronchiectasis, reactive airways (spasm in reaction to scents, allergies, exertion - but not always) and have been treated for mycobacteria avium complex (MAC), pseudomonas and repeated bronchitis. 4 years of treatment and daily airway clearance with saline SEEMED like it should be enough to make me comfortable. But, I still had daily episodes of "tight" or "heavy" chest, plus shortness of breath and high heart rate doing something as simple as walking up the stairs or wiping off the table. Heart problems were ruled out.

My pulmonologist suggested we try a Symbicort inhaler often used for COPD, budesonide (corticosteroid) and formoterol fumarate (long acting beta agonist) - my insurance covers the generic form, but it seems to work.

Combined with the Singulair, Mucinex, antihistamine & airway clearance, this seems to have done the trick for me. I hardly have used my rescue inhaler this summer (used to use it several times a day) and I even managed to mow 1/2 the lawn yesterday without wheezing!

I know that conventional wisdom is that people who have or had MAC should not use steroids, but my pulmo & I decided there is a balancing act between being able to breathe comfortably and stay active and reinfection risk.

Are you looking for a better way to control your asthma?
Sue

Can you explain what the issue is with people with MAC using steroids? You’re talking about inhaled steroids? Nasal sprays? Oral steroids?
Thanks,

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

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!

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!

@sweethighland I've always nebulized with 7% saline, nothing less. And my airway clearance has only been lying on my back and I can clear my airways that way. I've never used a vest, just the nebulizer. I use to nebulize every day but now I do it every other day. I was diagnosed six years ago but have had no progression for the last four years and I attribute that to the saline solution and exercising six days a week to keep my lungs in shape (as prescribed to me by best friend who is a doctor and when she heard about my diagnosis six years ago she said I had to exercise every day so I did what she said. She's smart.) I did take the big three antibiotics six years ago for one year but I really don't want to do that again if I don't have to. Hope that helps. Nan

Hello Nan!
Curious...what sort of exercising are you doing?
Cheers,
Cheryl

Hi Cheryl, I keep it varied because to be quite honest I hate to exercise but when my best friend, who is a doctor, told me I had to exercise everyday (she said this to me on the day I was diagnosed with bronchiectasis) to keep my lungs working I did what I was I told... 🙂 So I decided that I had to make it like brushing my teeth or eating. I HAD to do it no matter what. So on mornings when I really don't want to get up and get dressed and go to the gym or go walking I MAKE myself get up and do it. So I joined a gym (even though you could just walk regularly) and I take anywhere from 3-4 aerobics classes a week ( some with weights) for 45 minutes each time. It's about 40 minutes of work. On the other days I do a two mile power walk or walk very briskly for 30-40 minutes and that's a little over two miles for me. And then if it's raining or cold or I don't want to go anywhere I get on You Tube and find an aerobics class that I like. And then on days when I don't want to do any of that I just turn on my exercise music on and dance in my house. I always wear a Fitbit so I know what kind of workout I'm getting. I also look at this in a psychological way in that I feel like I'm telling my lungs that I'm in charge and I'm keeping those damn bugs out of there and trying to make it as inhospitable as I can for them. I don't want them setting up shop in my lungs. So I've been doing this for four years (diagnosed six years ago) and I've been in remission for four years. And I also do other stuff like take liposomal glutathione which is the single most important antioxidant in the human body (says my functional medicine doctor). As we age our glutathione levels drop so I just want to keep the levels up. I also take some herbs and other supplements that are supposedly good for the lungs and good for you in general. In a nutshell I just try and do everything I can to make my lung environment healthy. And of course, nebbing with saline solution! Hope that answers your question! Nan

@thumperguy "Remission" is the word my pulmonologist uses too! But I have continued 7% saline nebs several times a week and habitual airway clearance twice a day (mostly Aerobika once a day & post exertion once a day) along with a different and much more effective asthma medication.

We shall see this week if I am still there.
Sue