← Return to Starting MAC treatment with "big three" drugs: What to expect?

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@sueinmn

I usually try not to repeat myself, but much of this post is a copy.
First of all, there are lots of things you can do except wait. And some of them may slow the progress of the infection in your lungs enough so you "watch and wait" indefinitely without antibiotics. That is not a promise, only a possibility - each of us is different.
I was on the Big 3 for a year and a half, treating and tolerating the side effects as long as I could, before I told my ID and pulmonologist I couldn't do it any longer, even though I was still positive for MAC. They did a CT, which showed improvement,
but not complete clearance, and reached out to National Jewish Health to consult.

In December 2019, I went off the meds, and onto the following routine:
Airway clearance - nebulized 7% saline solution (7% has been shown to also fight the growth of MAC, but lower concentrations can also help thin the mucus & "tickle" your lungs to move mucus) followed by coughing, using my Aerobika if needed. At first twice a day, now once a day unless congested or having asthma problems (then I add levalbuterol neb too)
Anti-mucolytics - the best known is guaifenesin - Mucinex 600 LA (without a decongestant) is what I have been using for 35 years. Recent research in Cystic Fibrosis had also shown that N acetyl cysteine (NAC) is useful to thin mucus, so I also use 600mg twice a day.
Liquid - lots of it, especially water. I also drink and herbal tea called Breathe Easy by Traditional Medicinals, especially in cooll weather.
Healthy diet, moderate exercise and rest.

I have had only one exacerbation that was treated with increased nebs & steroids. My CT scan at 18 month showed no changes. Two weeks ago we caught a bronchial virus and I didn't even get bronchitis - a first for me in over 20 years, so I guess my routine is working.

Do you have an airway clearance routine? With bronchiectasis, asthma or COPD, our lungs don't clear mucus properly, providing a breeding ground for bacteria. So even when we don't feel congested, we need to clear it out ourselves. As I write this, I am sitting here "puffin' the pipe" and coughing!

Sue

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Replies to "I usually try not to repeat myself, but much of this post is a copy. First..."

Thank you for sharing this info!

I follow your posts because you write from experience besides all your reading.So you have responded to me before.As a reminder I was diagnosed with Bronchiectasis and MAC 2015 due to a bleed. I delayed treatment of Big Three until 11/21.Terrible side effects and a fall led to discontinuance.I faithfully follow airway clearance neb 3% twice a day(got a bleed from7%.) Also do the Vest twice a day.I exercise daily. Working with my third pulmonologist.Also visited The CF center at Colombia Presbeterian.
So why this post, I am losing weight. I am looking for suggestions. I am not good at a few little meals a day.

Rita pearl