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Did your MAC symptoms improve once you started Big3?

Posted by maliko @maliko, Nov 20, 2024

Just curious whether your mac symptoms improved after starting treatment with big3? Thank you!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

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lauraws | @lauraws | May 18, 2025
In reply to @pacathy "I haven't been treated for MAC, but want to bump up your question. Also, there was..." + (show)
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I haven't been treated for MAC, but want to bump up your question. Also, there was a recent thread that evolved into some discussion of med timing you might find helpful.
https://connect.mayoclinic.org/discussion/penn-medicinerifampin/

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Thanks for sharing the link!

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pacathy | @pacathy | May 18, 2025
In reply to @lauraws "Thanks for sharing the link!" + (show)
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Thanks for sharing the link!

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Hi Laura,
Did you see Sue's link in this thread (responding to sad state) to additional thread on subject? Think it'll help, too.
Good luck and do keep us posted.

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mariegrace | @mariegrace | May 18, 2025

So sorry.....get better soon

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lauraws | @lauraws | May 18, 2025
In reply to @pacathy "Hi Laura, Did you see Sue's link in this thread (responding to sad state) to additional..." + (show)
Profile picture for pacathy @pacathy

Hi Laura,
Did you see Sue's link in this thread (responding to sad state) to additional thread on subject? Think it'll help, too.
Good luck and do keep us posted.

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I’m not seeing her link for some reason. I’ll need to check again.

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lauraws | @lauraws | May 18, 2025
In reply to @mariegrace "So sorry.....get better soon" + (show)
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So sorry.....get better soon

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Thank you!

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cd33 | @cd33 | May 18, 2025
In reply to @lauraws "Hello, I’m new to the forum as I was recently diagnosed with a MAC infection and..." + (show)
Profile picture for lauraws @lauraws

Hello, I’m new to the forum as I was recently diagnosed with a MAC infection and just started the big 3 last Friday. I’m take one ethambutol, one Rifabutin and 4 azithromycin three times a week, MWF. I’m taking a probiotic each day to help avoid stomach upset and that has worked fairly well. I have a little nausea today and a headache. I’m still trying to figure out how to space the antibiotics and probiotics that work best for me. My issue is the day after taking the Rifabutin, I start running a fever and getting chills later in the afternoon. I feel terrible until taking a low dose of ibuprofen or acetaminophen and waiting for that to give me some relief which takes a while. Anyone else have this side effect and does it get better or do I need to get off that medication? This is my third day after taking the medication that I feel terrible the next day. Any advice or information would be greatly appreciated. Thank you.

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Hi there
Are you taking 4 Azithromycin? I have not heard of that dosing before. I understood it was 4x ethambutol, 1x Azithromycin and 2 x rifampicin. I thought I’d ask as 4 Azithromycin sounds an awful lot???

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Sue, Volunteer Mentor | @sueinmn | May 19, 2025
In reply to @cd33 "Hi there Are you taking 4 Azithromycin? I have not heard of that dosing before. I..." + (show)
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Hi there
Are you taking 4 Azithromycin? I have not heard of that dosing before. I understood it was 4x ethambutol, 1x Azithromycin and 2 x rifampicin. I thought I’d ask as 4 Azithromycin sounds an awful lot???

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Capsules may in several dosages, so you may take a different number of each medication to make up exact dosage prescribed. For example, for part of the time I took 2- 250mg Azithromycin for a dosage of 500mg 3 times per week. Later that was changed to 250mg 7 times per week, so I only took one capsule.
Rifampin and ethambutol dosages may depend on your weight, or what your doctor thinks you can tolerate, so the number of capsules may differ between individuals.

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pacathy | @pacathy | May 19, 2025
In reply to @lauraws "I’m not seeing her link for some reason. I’ll need to check again." + (show)
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I’m not seeing her link for some reason. I’ll need to check again.

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Here's the link she posted. Her post was just below mine, I think, and also had good info on searching the forum.
https://connect.mayoclinic.org/discussion/starting-the-big-3-terrified/
The threads can get long.

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Toni D. | @tcd518 | May 19, 2025
In reply to @lauraws "Hello, I’m new to the forum as I was recently diagnosed with a MAC infection and..." + (show)
Profile picture for lauraws @lauraws

Hello, I’m new to the forum as I was recently diagnosed with a MAC infection and just started the big 3 last Friday. I’m take one ethambutol, one Rifabutin and 4 azithromycin three times a week, MWF. I’m taking a probiotic each day to help avoid stomach upset and that has worked fairly well. I have a little nausea today and a headache. I’m still trying to figure out how to space the antibiotics and probiotics that work best for me. My issue is the day after taking the Rifabutin, I start running a fever and getting chills later in the afternoon. I feel terrible until taking a low dose of ibuprofen or acetaminophen and waiting for that to give me some relief which takes a while. Anyone else have this side effect and does it get better or do I need to get off that medication? This is my third day after taking the medication that I feel terrible the next day. Any advice or information would be greatly appreciated. Thank you.

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Hi Laura. I started the Big 3 three times a week in February, had a rocky couple of months, but am feeling much better now and coughing so much less. I take 500 mg Azithromycin and 1500 mg Ethambutol with breakfast and 600 mg Rifampin on an empty stomach (although with a full glass of water) before bed, a dosing schedule I learned on this site. And every single day I eat a 5.3 ounce container of Greek yogurt, which has kept my digestive system comfortable.

Those first couple of months, while your body is adjusting, can be tough. I too experienced some nausea and loss of appetite from the Azithromycin and Ethambutol and often felt crummy the day after taking the Rifampin. My pulmonologist said it was okay to take ibuprofen for the fever and discomfort.
My heart goes out to those taking these drugs seven days a week; that must be so much more difficult.

I hope you are able to give your body time to adjust to these powerful drugs. They are effective precisely because they are so powerful! Do you have monthly sputum testing done? My April samples just came back negative for AFB, which makes me glad I persisted through those first months of discomfort and feeling sick. Wishing you strength!

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lauraws | @lauraws | May 19, 2025
In reply to @cd33 "Hi there Are you taking 4 Azithromycin? I have not heard of that dosing before. I..." + (show)
Profile picture for cd33 @cd33

Hi there
Are you taking 4 Azithromycin? I have not heard of that dosing before. I understood it was 4x ethambutol, 1x Azithromycin and 2 x rifampicin. I thought I’d ask as 4 Azithromycin sounds an awful lot???

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I stated that incorrectly. I’m taking 4 ethambutol, 1 azithromycin and 1 Rifabutin.

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