How MAC patients have tolerated taking the 3 antibiotics

A few years ago I took the 3 Abx for almost a year. My body tolerated well. No adverse reactions . My lungs have been MAC free ever since and my O2 Sats have been in the 90’s. You may be surprised how well you tolerate the ABX.

I did 28 months and another 12 month stint. Tolerated them very well once AZ switched to with dinner.

I shared your terror of the 3 antibiotics and avoided them for a year, until I decided things would likely just get worse and be harder to resolve if I waited any longer. I've now been using them for a month, and found I'm managing them much better than expected. I have a fairly constant mild headache (not at all disabling), occasional periods of light-headedness about an hour after I take the pills. Some days, but not all, I'm extremely fatigued and have recently been having problems with achy legs. I'm sorry I let my fears delay this for so long. My ID doctor says the side effects will likely lessen as my body adjusts. I take them 3 days/week-- I take the Rifampin in the morning on an empty stomach and if I don't wait any more than an hour for breakfast, I don't have the dizzy spell. I take the rest with lunch and an hour later often feel lightheaded. I may switch to taking the rest at with dinner instead. Everyone, of course, has a different reaction, and I send you good wishes.

I started the Big 3 in Dec. after one of my CT scans showed deterioration. Thus far, I have tolerated them well. I take the Arythromycin after breakfast, Ethambutol after lunch, and Rifampin on an empty stomach before bed. I also take a probiotic and try to drink lots of water. Good luck.

What probiodics do you take?

I take Florastor. It is available at the drugstore but I usually get it from Costco.

I take Seed ds 01, which contain a good variety of good bacteria, and culturelle probiotics, which is proved to be good even when taking antibiotics. I use the 2X one, specifically for antibiotics use. Florastor is also good as it contains a yeast which is proved to be antibiotics resistant. But it contains milk lactose. So take a little bit caution for people who are genetically unable to digest milk lactose.

Hello. I recently began the 3 strong antibiotics about a month ago. At first had very uncomfortable GI response for two weeks that has since settled down. I too take take lots of probiotics to help support my GI tract as well as fermented foods and a coconut based yogurt like product called Cocojune. I take all the 3 antibiotics at nite, I read this suggestion here. The premise being that you would be sleeping when side effects were at their highest. I also had bloodwork drawn before I started and then when I would add a new antibiotic. I did develop significant anxiety and had to dbl the dose of antidepressant/anti anxiety meds. that I am taking. My physician wanted me to do the daily dose of meds vs. every other day. Perhaps if you go with the every other, your side effects would be less. Good luck and hope this gives you some guidance.

Hi, my name is Mary. I was diagnosed with MAC lung disease in March 2024 after 2 weeks in the hospital. On June 15 I started on Azithromycin, Ethambutol, Rifampin and Amikacin IV daily. I was only on the IV for 1 week when my ID switched me to Arikayce (Inhaled Amikacin). I tàke Azithromycin and Ethambutol in the morning after breakfast, Arikayce at 5:30 and Rifampin before bed. I also take a probiotic at 12 noon so I have at least 4 hrs. between any antibiotic and the probiotic. The first 2 weeks I was nauseous and had no appetite. After that it got better and so far I seem to be tolerating them pretty well.

I also started to take the three antibiotics a little over a month now but had such problems with Rifampin that my doctor took me off of that one and we added arikayce and I seem to be tolerating that quite well.
I do have extreme fatigue lightheadedness and this nauseous feeling shortly after taking the two antibiotics also some pains in the calf of my leg especially when getting up in the morning. I am 82 years old and very underweight 5’6”and 101 pounds. I have lost so much weight and I am so frail now I’m afraid to go anywhere by myself. I cannot walk into a store without being so out of breath I have to sit down. Had to start using a walker which I never had to do before.
My disease started in 2018 I was treated for 12 months with just two antibiotics by my pulmonologist. Seem to get better but came back about a year ago with a vengeance this time. A few of the Nodules grew to 15 and 17 showed up on my last CT scan so was referred to a ID doctor. He did say two antibiotics to treat disease is not enough I should’ve been put on three. I couldn’t stay on the Rifampin more than a year the first time around the second time I couldn’t tolerate it more than two weeks. So I’m hoping this treatment of two antibiotics and Arikayce well shrink the nodules and restore my health at least to some extent, anything would be better than what I have now.