I need help with tolerating MAC antibiotics please

Posted by crt20 @crt20, 2 days ago

I was diagnosed with MAC in June. I began with Azithromycin, Ethambutol and Rifabutin. Daily I am nauseous and dizzy and lack an appetite- any advice on how to tolerate these meds?

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@crt20 Welcome to our support group. Many of us have experienced these side effects while on the antibiotics, and we each developed our own strategies for coping.

For me, the keys were small, frequent mini-meals, daily probiotics, and taking the meds at bedtime. I'm sure others will share their tips.

Are you taking the medications daily or 3 times per week?

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Thank you -I am taking the medications daily.

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Profile picture for crt20 @crt20

Thank you -I am taking the medications daily.

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@crt20 Curious minds want to know - what led to your MAC diagnosis?
And did the pulmonologist or infectious disease doctor explain their rationale for daily treatment? The usual protocol for MAC treatment is 3x per week unless you have cavities in your lungs. Did you CT scan show cavities?

Are you doing daily airway clearance to help clear the infection?

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Profile picture for Sue, Volunteer Mentor @sueinmn

@crt20 Curious minds want to know - what led to your MAC diagnosis?
And did the pulmonologist or infectious disease doctor explain their rationale for daily treatment? The usual protocol for MAC treatment is 3x per week unless you have cavities in your lungs. Did you CT scan show cavities?

Are you doing daily airway clearance to help clear the infection?

Jump to this post

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I take them daily. At 6 pm with dinner. Seems to help with food. And then if I feel crappy I’m just watching tv after dinner.

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I take Ethambutol on one day, pills are large, so I take with applesauce. I read that Calcium can affect the effectiveness of the medication, so wait to take any supplements for at least an hour, which is why I don't take with yogurt. I then eat a nice breakfast, followed by my gummy probiotic later, and the Ethambutol doesn't bother me. The next day I start with Rifampin when I get up to the bathroom early, swallow almost a bottle of water and go back to bed for an hour or so. When I get up I eat half my breakfast, take my Azithromycin, and then eat the remainder of my breakfast. Later I take my vitamins and probiotic. This every other day has worked very well for me, with only very occasional tummy pain.

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After a year of treatment for MAC, I recently changed doctors. Every time I saw my ID doctor, I complained how much I was feeling awful on the meds, and he never suggested that there was another treatment that might work better for me. My new ID doctor changed my medication regimen and I am feeling much better since. My former doctor prescribed Rifampin, Clarithromycin and Ethambutol, taken 3x a week. The new doctor prescribed Azithromycin in place of the Clarithromycin. As soon as I began the new meds — immediately — my diarrhea and gut problems disappeared. I know that you’re on Azithromycin, Ethambutol and Rifampin. Perhaps you can ask your doctor if one of the three meds you’re on could be replaced with something that doesn’t upset your gut as much. Also, I’ve found that eating Greek yogurt is very helpful, but I don’t take it within four hours of taking the meds. I’ve found it to be much more effective than probiotic pills that I used to take. Hope this is helpful, and good luck with your treatment!

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Hi, I am on the same drug protocol as the original poster, @crt20: Azithromycin, Rifabutin, and Ethambutol I'm only three 1/2 weeks into the regimen. The ID doc said he didn't care when I took them during the week, as long as I had the required every other day between each dose of an individual med. So example: I may take Azith at lunch on Mon,Thurs,Sat. Rifabuton, at lunch on Tues, Fri, Sun. Ethambutol at Supper on Tues,Thurs, Sun. This has varied each week a little bit and I got a pillbox to be sure each one is being taken 3 times during the week. I have always had to take antibiotics with food or I will be nauseated.
On the days when I am taking two of the "Big 3", I am not taking them at the same meal. I think that helps me tolerate them. I have had no problems, except a couple times, a little while after Azith, I get pains in the stomach that pass within an hour. I also try to drink kombucha tea between doses, and yogurt in the morning since I don't take the pills in the morning. I am already feeling better.

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Ondansetron nausea medication saved me during my treatment. I took the 8 mg dissolvable tablet and felt better literally within a few seconds.

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