Ethambutol - side effects

It is like you see some stars. But it is occasionally, like once a month and it is minimal. I heard few people are affected by this medication. Don't worry too much. Take care!

Can you take it at night. Then maybe sleep through the headache? Thats what I do. Helps some.

Hello, I was the original poster in January 2025. The headache lasted about a week and then my body adjusted! I did end up having to go off the Rifampin because it was really triggering pre-existing heart arrthmyias (that had gone away but then came back secondary to Rifampin). I just went for a 6 mo. check in and CT scans show a lot of improvement and progress on only Ethambutol and Azithromycin. Apparently the experts are studying the three drug versus two drug cocktail but I'm not a doctor and not recommending anyone go off their regimen! For background, my demographics are: I'm a 54 y.o. slim female with no other health conditions (well, except some cardiac history!) except this surprising MAC diagnosis.

I just saw this post and wanted to add that I started ethambutol about 10 days ago and have had a low level headache since. I take my meds before bed, yet I still have the headache all day. I am also someone who does not normally get headaches so it is clear to me the headaches are from the ethambutol. I don’t think it is related to my vision, as that has not changed since I started (I have at home self monitoring tests I do daily; will see eye doctor for monthly screening if no obvious changes noted on at home tests in the meantime). Maybe I sleep through the worst of it. Hard to say. I haven’t taken anything for the headaches as I reserve my over-the-counter pain meds for high need circumstances. I am hoping the headaches will improve as I adjust to the meds, time will tell.

I always take it at night - no headache, just some stars occasionally. I tolerate this medicine so far.

I am so glad to hear that about your eye exams. I started the meds this week. How has your stomach been these last 17 months? Any advice to offer? It seems that stomach issues are common.

I just started the 2-drug regimen - Azithromycin and Ethambutol. Because I am still on a breast cancer medicine, I could not take the Rifampin. Can I ask you about your side effects on the 2 drug regimen? Any advice? I am open to listening to any advice to get through this. I have bronchiectasis and Mac. Thanks in advance.

Def mention headaches to your doctor also. I did NOT want to take Tylenol for the headaches b/c I was upset about taking medicines but ultimately I did, and it helped. I ended up having about a 7-10 day period in Feb where I was sick with a stomach virus and went off all the medicines (not recommended!), and when I went back, I had headaches again for a few days. I hope yours pass soon.

I honestly feel totally fine on the 2. I think my gut is probably affected but only minimally. I definitely "go" more and more loose, but not diarrhea or awful GI upset. I was very worried - sort of waiting around for the diarrhea but I feel okay! I take the ethambutol first thing in a.m. and azith at night before bed. I'm not thrilled about it and it was a mental adjustment but now I'm feeling more acceptance. Again my doctor at Emory told me they're (MAC doctors) studying the rifampin and that the two we're on are the "bread and butter" and the rifampin was the gravy - so I feel okay that I'm not taking it. We shall see. Thinking of you that you're managing this and breast ca.

Thank you so much. I am going through accepting it right now. I am with doctors at MUSC in Charleston - the MAC group and they are very positive about the 2-med approach. I know we are all different in how we react, but it is hopeful to hear that you are feeling fine. All the best to you!