Doses for the Big 3 meds for MAC

@rc4mc They undoubtedly will want you on two other drugs, to make sure your body doesn't get desensitized to Azithromycin. My doc told me this week that studies show the efficacy of just two—AZ and Ethambutol—is negligible. Arikayce supposedly has the best result. But they all have side effects of course. I hate taking the drugs but am soldiering on.

I am just starting the Big 3 after having my middle lobe removed from my lung three weeks ago. I tried Claritromysin 500 mgs two times per day but within one day had terrible neuropathy pain shooting into my foot. This morning I have gone back to Azithrinycin 250 mgs per day with medication for diarahia and will add the other antibiotics thru the week. I tip my hat to all who have undergone the treatment, stuck with it and gotten to the other side - you are my inspiration!

The 2020 NTM treating guidelines have a table, Table 3, that outlines the suggested drug protocols, dosages, etc. For anyone curious about the dosages they have been prescribed, this would be a good place to start (as well as asking your doctor, of course). I have tried to attach those Guidelines here, but I don’t often have good luck with attachments.

@rc4mc thank you for your response. May I ask why they took you off of the ethambutol?

I was concerned about the potential side effects, particularly on the optic nerve, which can result in blurred/reduced vision. With my full-time job + full-time studies + role as the only driver in the family the risk didn't seem worth it, especially since my symptoms were gone, and my doctor agreed. I've been off it 5 months and I'm doing fine with just the other two. Others in this foru have mentioned seeing an opthalmologist regularly (I forget the cadence) while on ethambutol. Hope this helps!

The medications I took for my MAI lung infection - three times a week- were as follows:
Azithromycin 500mg
Ethambutol hcl 1200mg (3 tablets of 400mg)
Refampin 600mg (2 tablets of 300mg)
My weight is about 155 lbs.
I hope this information will be helpful to you.

I take them 7 days a week. Daily doses are Azithromycin 250 mg. Ethambutol 800 mg., Rifampin 450 mg. I weighed 135 when I started 6 weeks ago. Now weigh 105 lbs. Weight is falling off me. Meds made me so sick first couple of weeks and couldn't eat. Forcing myself to eat small things throughout the day but still keep losing. Ugh what to do?

I have also been on the 3 MAC drugs since August 2025. When I started I weighed 97 pounds and now I am down 87/88 pounds. I also take 600mg Rifampin, 500mg Azithromycin and 1100mg Ethambutol. I tested negative in September/October but positive again in March. They assumed I didn't get a good culture. No one mentioned to me how these drugs effect other medications like Levothyroxine. I have been exhausted since November and my thyroid was not tested until my yearly checkup in February. They still have not been able to regulate my thyroid. It was recommended that I start taking Arikayce but I am reluctant. I am hoping to get into the MAC Program at Stanford for a second opinion. Was wondering if others have had other side effects besides the known one's.

@ronneee so sorry you are losing weight. I'm not looking forward to that. I'm just getting started. Adding the Rifampin next week. So did the nausea subside after a few weeks? That's good to know. I hope I can tolerate all of it. I hope you get to a point where you are not losing. It doesn't sound like you need to lose any more. Thanks for your response. Hang in there!

@deb62 extreme nausea subsided after 3 weeks. Took nausea meds. Nausea now is manageable but can't take meds for it noe because soon as I started these meds restless leg syndrome was amplified and while doing research found out nausea meds will cause RLS to magnify a N d it did. One of the meds causes your other prescription meds to be ushered out of your body fast so I am experiencing that problem too. Determined to hang in their tho because cough has subsided so much and after being treated for anemia I have some energy again.