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I am 46 and have MAC/MAI. My doctor at NYU said given that I am a relatively young and otherwise healthy, she would want to treat my MAC infection aggressively and get me in the Encore trial (I go back in to discuss the treatment plan this month).
As a second opinion, I asked the same question of Dr. Chuck Daly at NJH during his recent webinar on NTM Mycobacteria—whether he would opt to treat someone of my age aggressively and he said he would simply because it would hopefully wipe the slate clean with the goal of avoiding additional infections which could set me up for worsening symptoms and bronchiectasis.
I am on the fence too because of the potential for side effects from the medications and I have been very consistent with my Airway clearance, but their reasoning also makes sense and I trust it. Will see how it goes when I go for follow up this month.
Dr. Chuck Daly's webinar: https://youtu.be/5cgFoQ0aDAc?si=yhb8SkB3CShk-0W1
Encore trial: https://clinicaltrials.med.nyu.edu/clinicaltrial/1544/encore--randomized-double-blind/?section=elg
Replies to "I am 46 and have MAC/MAI. My doctor at NYU said given that I am a..."
If you can get into the clinical trial, that would be great. I agree with treating while young -because your whole system is stronger, BUT "watch and wait" is a valid treatment method for asymptomatic MAC, little or no lung damage, NTM related or otherwise. This is not really "not treating" but treating conservatively first.
That is, IF you can commit to a daily airway clearance routine for 6 months. You may be able to beat this without antibiotic therapy. If not, or if things get worse before 6 months, you can always start antibiotics.
Why do I think this? Risks of side effects from the antibiotic therapy are not insignificant, no matter your age. And because we are learning that if you need a "second round" of therapy in a few years, you are at much higher risk of adverse reaction to two of the drugs - Rifampin and Ethambutol. Finally, we are in very hopeful stage right now, with a number of new therapies on the horizon, which will hopefully not require 18-24 month of 3 antibiotics.
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The side effects are nothing compared to what MAC can do as far as damage goes....in my opinion. This disease has its own evil mind. Some say its slow growing but in many cases it isn't. I would get ahead of it as far as I could. I had a 10 cm cavity grown in my upper left lobe within 30 days while "being on the fence" and waiting to start treatment. Now I can't get rid of it or the MAC. Finally going on inhaled Ariakace is what shrunk it to 4 cm but that's the only improvement. You can always stop the treatment. But you can't always reverse the damage.