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 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.

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?

@bfpa
After one year my dosages were increased to daily, rather than three times per week (increasing nodules). I take Azithromycin 250 MG, Ethambutol 800 mg, and Rifampin 450 MG every day. I will begin using Arikayce 590 MG in one week. I also take Levothyroxine 50 MG for Hypothyroidism. I have been very fatigued and weak since being diagnosed in January 2025. It feels like untreated hypothyroidism but is actually the lung infection causing the inability to exercise, heart palpitations and exhaustion. My weight was 88 lbs. and is now 94 lbs.

@ronneee please check in with your doctors ASAP regarding the weight loss. That kind of weight loss is unsustainable. Maybe you need a change in drug regimen. There is also a dietitian, Michelle MacDonald, who has a lot of expertise with NTM patients and low weight, I am sure she would have ideas for you. She use to be with NJH but now consults privately.

@iart Curious: Is that "Azithromycin 250 MG, Ethambutol 800 mg, and Rifampin 450 MG" once or twice a day? Because I'm on Clarithromycin 500 Mg and Rifampin 300 Mg twice a day.

@ronneee please check in with your doctors ASAP regarding the weight loss. That kind of weight loss is unsustainable. Maybe you need a change in drug regimen. There is also a dietitian, Michelle MacDonald, who has a lot of expertise with NTM patients and low weight, I am sure she would have ideas for you. She use to be with NJH but now consults privately.

@capletcher - Thank you for your reply. I'm wondering if your response may have been for someone else. For my particular infection (mycobacterium avium complex), Azithromycin, a macrolide, is recommended along with two other drugs, three times per week. I was originally on that plus Rifampin, plus Ethambutol. I'm off the Ethambutol (been off of it for five months, my symptoms have been gone for 7 months, and I need my vision, plus the fatigue from Ethambutol was interfering with my activities). Now I'm on Azithromycin and Rifampin until September. We'll have to see what happens and deal with any changes if needed. For now, it's going well!

@rc4mc I am surprised you are off ethambutol because it is the accompanying medication with azithro and rifabutin. When rifabutin and ethambutol were stopped for me because of very elevated liver enzymes and clofazimine was added plus four months of amikacin IV, national jewish doctor added ethambutol to that regimen. I am sure ethambutol is part of the regimen so ask your doctor. Unless there is a reason it was stopped of course.