Doses for the Big 3 meds for MAC

Posted by deb62 @deb62, May 16 8:09pm

I have had MAC for about 3 or 4 years. I’ve been in the “watch” stage with no meds. I also have Wegeners Disease which is under control but the meds bring down my immune system. I’ve had pneumonia for the last couple of months so my ID doctor is starting me on the Big 3 this week. I’m curious about the dosage that others are taking. Here’s what I have been given:
Azithromycin- 500mg
Ethambutol HCL - 1600 mg
Rifampin - 600mg
All 3 x week starting with the Azithromycin 1st & gradually adding the others.
Does anyone think the ethambutol a high dosage? Im 5’4 & weigh 145lbs.
Thanks for your input.

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Profile picture for galec @galec

@kris2468

These are going to be my doses also. I have started Azithromycin and will add the other two. How do you take them? I know it’s individual but trying to find out what works for others. Probiotic timing? What wonderful news for you!!

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@galec I started taking azithromycin in the morning rifampin at midday and ethambutol at night. At NJH they had me take them all together in the morning. No problem. I take probiotic at night. Good luck!!

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Profile picture for kris2468 @kris2468

My dosages are azithromycin 250 mg, rifampin 600 mg, ethambutol 800 mg daily. I’ve been on 12 months with no issues. If my next sputum culture is negative I can stop in January. After 6 months my CT scan had improved. All the best to you!

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@kris2468 You are SO fortunate to have had no side effects!

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Profile picture for kris2468 @kris2468

@galec I started taking azithromycin in the morning rifampin at midday and ethambutol at night. At NJH they had me take them all together in the morning. No problem. I take probiotic at night. Good luck!!

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@kris2468
thank you

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I’m so glad to find this site as my drs have given me little info re MAC which I was diagnosed with in April 2026. My pulmonologist sent me to infectious disease and the dr’s message Is take the meds. I was on azithromiacin and ethambutal and only tolerated it for 3 weeks. I had daily headaches weakness and terrible dirrhea the 3rd week. Dr said to stop but gave me no alternative. I’ve been doing the nebulizer twice a day and a few exercises I’ve learned. I will zoom with her on July 16. Do you know any alternatives to these meds? I’m 86 and just want to slow this down as I doubt I can erase it from my lungs with meds I cannot talk. My lungs started with problems during treatment for ovarian cancer which has been in remission since 2022

After much

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I am about the same size you are (5’4” and 140lbs). I take Ethambutol 800 mg daily which comes to 5600 mg per week, a bit more than your weekly total of 4800 mg. My doctor started me on 1000 daily, but blood test showed that was too much. He had me skip the evening dose, take it in the am and have the blood draw 2 hours later. If you are still concerned you might ask to have the level tested.
Anna

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Profile picture for leemujica @leemujica

I’m so glad to find this site as my drs have given me little info re MAC which I was diagnosed with in April 2026. My pulmonologist sent me to infectious disease and the dr’s message Is take the meds. I was on azithromiacin and ethambutal and only tolerated it for 3 weeks. I had daily headaches weakness and terrible dirrhea the 3rd week. Dr said to stop but gave me no alternative. I’ve been doing the nebulizer twice a day and a few exercises I’ve learned. I will zoom with her on July 16. Do you know any alternatives to these meds? I’m 86 and just want to slow this down as I doubt I can erase it from my lungs with meds I cannot talk. My lungs started with problems during treatment for ovarian cancer which has been in remission since 2022

After much

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@leemujica Have you been able to find other conversations about Medications and BE on this Mayo Clinic Connect.?
You can search further to read other thread conversations to help you understand more. Go back up to the first post and you will see a long sentence that says:
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Click on the blue and that will help you to view other conversations.

Are you seeing a doctor, pulmonologist and Infectious Disease doctor at one of the Centers of Excellence that caters to Bronchiectasis and MAC infections.?
Barbara

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