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!

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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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@lauraws . I had the low grade fevers when I was diagnosed BEFORE I started the meds, But I found that my low grade fevers went away after being on the meds for a few weeks. Make sure your doc knows about the fevers/chills. You will find a schedule that works for you. I have been on Big 3 for a year. I take my Rifampin at 3:30 p after no food except water for 2 hours. That way I get a good breakfast & lunch done. I take the Ethambutol & Azithromycin after I eat dinner at 5 pm. I also take *2 gas X tabs with the Ethambutol & azithro, it seems to help my bloating & cramps on days I take the big 3. I am also on arikayce inhaled since March 2025. I take my other routine meds at 10 am & again at 8 pm. Do what works best for you & hang in there !

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Profile picture for pacathy @pacathy

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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Thanks for sharing the link! All the information is very helpful.

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Profile picture for Toni D. @tcd518

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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Thank you for sharing your experience and what’s been working best for you! This first week has been rough with the fever, chills and headache the day after taking the medication. It is encouraging to hear it did get better for you after a period of time. I’m checking with my doctor to see if I can hold off on taking the Rifabutin for another month or so since I’m having difficulty tolerating it. We have an upcoming trip and I’m hoping to feel the best I can.

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Profile picture for tte @tte

@lauraws . I had the low grade fevers when I was diagnosed BEFORE I started the meds, But I found that my low grade fevers went away after being on the meds for a few weeks. Make sure your doc knows about the fevers/chills. You will find a schedule that works for you. I have been on Big 3 for a year. I take my Rifampin at 3:30 p after no food except water for 2 hours. That way I get a good breakfast & lunch done. I take the Ethambutol & Azithromycin after I eat dinner at 5 pm. I also take *2 gas X tabs with the Ethambutol & azithro, it seems to help my bloating & cramps on days I take the big 3. I am also on arikayce inhaled since March 2025. I take my other routine meds at 10 am & again at 8 pm. Do what works best for you & hang in there !

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Thank you for sharing your experience! I’m very encouraged to hear how others have navigated this antibiotic regimen and found what works best for them. I appreciate your words of encouragement!

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Profile picture for lauraws @lauraws

Thank you for sharing your experience and what’s been working best for you! This first week has been rough with the fever, chills and headache the day after taking the medication. It is encouraging to hear it did get better for you after a period of time. I’m checking with my doctor to see if I can hold off on taking the Rifabutin for another month or so since I’m having difficulty tolerating it. We have an upcoming trip and I’m hoping to feel the best I can.

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Sorry, I failed to answer your question. I’m not having a monthly sputum test done at this time.

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Hi Laura I thought that might have been typed wrong and hoped you hadn’t been taking them incorrectly!!!! All good, hope the side effects settle soon.

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Profile picture for cd33 @cd33

Hi Laura I thought that might have been typed wrong and hoped you hadn’t been taking them incorrectly!!!! All good, hope the side effects settle soon.

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Thank you! Me too!

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Profile picture for tte @tte

@lauraws . I had the low grade fevers when I was diagnosed BEFORE I started the meds, But I found that my low grade fevers went away after being on the meds for a few weeks. Make sure your doc knows about the fevers/chills. You will find a schedule that works for you. I have been on Big 3 for a year. I take my Rifampin at 3:30 p after no food except water for 2 hours. That way I get a good breakfast & lunch done. I take the Ethambutol & Azithromycin after I eat dinner at 5 pm. I also take *2 gas X tabs with the Ethambutol & azithro, it seems to help my bloating & cramps on days I take the big 3. I am also on arikayce inhaled since March 2025. I take my other routine meds at 10 am & again at 8 pm. Do what works best for you & hang in there !

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Has anyone experienced a dry mouth while on the antibiotics? Does it get better and what may have helped you overcome a dry mouth? I’m struggling with that issue as well right now.

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Profile picture for lauraws @lauraws

Has anyone experienced a dry mouth while on the antibiotics? Does it get better and what may have helped you overcome a dry mouth? I’m struggling with that issue as well right now.

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It was a problem for me. I used a moisturizing mouthwash (I forget the name) and sucked on gin-gin candies. The bad news - after doing it for 2 years, several fillings failed (dentist says dry mouth increases this risk.) I had to have 4 crowns in the last 5 years after only having one in my first 70 years.
Please be diligent and ask your dentist for advice. MAC is hard enough without adding tooth issues!

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Profile picture for Sue, Volunteer Mentor @sueinmn

It was a problem for me. I used a moisturizing mouthwash (I forget the name) and sucked on gin-gin candies. The bad news - after doing it for 2 years, several fillings failed (dentist says dry mouth increases this risk.) I had to have 4 crowns in the last 5 years after only having one in my first 70 years.
Please be diligent and ask your dentist for advice. MAC is hard enough without adding tooth issues!

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Thanks for sharing your experience!

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