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Anyone else have really bad gastro side effects from Azithromycin?

Posted by linda1334 @linda1334, Jun 18 2:12pm

I just started the second course of treatment for MAC. Was treated starting in 2023 initially with azithromycin, rifampin, and ethambutol on an every other day regimen, azithromycin one day and the rifampin and ethambutol the next with Sunday off. After 16 months, I had neuropathy from the ethambutol and the doctor thought that I was probably okay to stop treatment as a suputum sample came back negative. But two months later after stopping, I submitted another one that looked suspicious and it came back positive. I had to go through quite a bit of neurology testing and now my doctor put me on azithromycin and rifabutin every day along with Arikayce. I always had problems with the azithromycin during the last course of treatment but I managed with every other day. But now the gastro side effects are horrible. Every day I can count on the severe pain starting about 2 - 3 hours after I take it even on a full stomach. Anyone else have this problem and if so, how do you manage it?

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linda1334 | @linda1334 | Jun 21 1:25pm
In reply to @winema "Hi Linda, it sounds like you're basically asymptomatic? You don't feel bad, don't get winded, don't..." + (show)
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Hi Linda, it sounds like you're basically asymptomatic? You don't feel bad, don't get winded, don't cough much? That's been my story for most of 14 years since diagnosis (dx was due to long story; had no symptoms whatsoever). No doc I had thought treatment was a good idea as long as I was doing so well. In hindsight, I think they were right, except for past year or two when I could tell it was getting worse. So, I guess it might be worthwhile to ask yourself and docs, why treat now? If you feel fine without treatment and are miserable with it, what's the point? People here say airway clearance helps, exercise does help; maybe try those without the toxic meds? Just my take, but I'm new here. 🙂 Good luck.

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Hi. Thanks for your input! Yes, I don't feel bad or get winded and I don't cough much. Each time I go to the doctor and they listen to my chest, they tell me it's clear. So I will be talking to the new ID doctor about this. My daughter is a critical care nurse in a hospital and she said when she spoke with some of the ID doctors she knows there when I was first diagnosed, they said the same thing as you, if I don't have symptoms why treat at this point. But at the time, I went ahead with the initial treatment hoping I could eradicate this bug. Unfortunately it didn't work.

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winema | @winema | Jun 21 10:29pm
In reply to @linda1334 "Hi. Thanks for your input! Yes, I don't feel bad or get winded and I don't..." + (show)
Profile picture for linda1334 @linda1334

Hi. Thanks for your input! Yes, I don't feel bad or get winded and I don't cough much. Each time I go to the doctor and they listen to my chest, they tell me it's clear. So I will be talking to the new ID doctor about this. My daughter is a critical care nurse in a hospital and she said when she spoke with some of the ID doctors she knows there when I was first diagnosed, they said the same thing as you, if I don't have symptoms why treat at this point. But at the time, I went ahead with the initial treatment hoping I could eradicate this bug. Unfortunately it didn't work.

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Hang in there, trust yourself.

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