Connect
Anyone else have really bad gastro side effects from Azithromycin?
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?
Like
Helpful
HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Connect
See if you can switch to clarithromycin. ( irene5)
@linda1334 When I read "...now my doctor put me on azithromycin and rifabutin every day along with Arikayce..." my stomach began to hurt like you described - almost like a PTSD flashback. When I was on daily azithromycin, that was my life for over 6 months. We had already trued clarithromycin and it was no better.
I didn't know as much 6 years ago as I do now, so stuck out the Big 3 (and was miserable) for 6 months (this was before Arikayce.) What I would do now, that I didn't fully understand back then, was to ask for them to do sensitivity testing on a sample and find something else for me - even if it meant IV antibiotics.
If I were you, that is what I would ask my doctor to do. If you are seeing a pulmonologist, you may need to add an infectious disease doc to your team. Please call now - don't wait for your next scheduled appointment!
In the meantime be sure you are doing daily airway clearance to help rid yourself of the persistent infection.
Sending you a virtual hug and a bag of GinGin candies for your stomach.
Hi Sue,
Thanks for your reply. I have both a pulmonologist and an ID doctor. My ID doctor is the one who prescribed the treatment regimen. However, he is closing his practice at the end of this month and moving out of state. So I had to change to a new ID doctor and I have a first appointment early next month. I'll see what she thinks. I actually had to take a break and skip the azithromycin for a day so my intestines could calm down a bit. I feel better today and I'm going to try switching the rifabutin to after lunch and the azithromycin to after dinner to see if I can handle it better at night. I took it at night when I was doing the every other day therapy the last time and that seemed to be okay depending on what I ate. But it wasn't every day. The Arikayce is arriving early next week and I have another whole set of worries with that and the seemingly terrible side effects. This is all very scary. And the thing is, I don't feel bad with the MAC. I don't have coughing or a lot of congestion so I really can't get anything out. I even use the Aerobika to see if I can try to get anything going but I can't. I never get winded even walking three miles every day at 4.5 MPH speed. So I don't know what else I can do in that regard.
-
Like -
Helpful -
Hug
2 ReactionsThanks, Irene. I'll talk to my new ID doctor and ask about that, but I think that one has the same effect on me. Probably worth a try though.
Oh ok. Well good luck. Clarithromycin was what I was switched to from the azithromycin. It didn’t give me the GI yuckiness and pain I had with the azithromycin. I think there are side effects from everything. The lesser of two evils is what I went with. Best, Irene
Hi have you tried probiotics? Also I used to eat banana( not so ripe) and rice , that seemed to slow down my upset stomach. Hopefully this help you too.
I can see why you switched if it worked for you, Irene. And I agree about the lesser of the evils. I will see what my new ID doctor says, but I wouldn't be adverse to trying. You never know. Thanks again. : )
Hi Rosa. Yes, I take probiotics every day. I'm using VSL3 which is cold shipped and supposed to be very good. I've been on it ever since I started MAC treatment in 2023. When I started my intial treatment in 2023, my ID doctor said the key to minimizing the gastro discomfort was to eat a meal with a lot of protein. So that's what I did then and tried this time, but now that I have to take it every day, I'm having problems even when I eat protein. I'll try your tip of banana and also rice. Thank you!
-
Like -
Helpful -
Hug
1 ReactionSounds like we might have the same Dr - my ID is leaving his practice as well. Hope you can start getting some relief and feel better.
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.