Ethambutol - side effects

I’ll keep that in mind over the next few months.
My baseline is textbook normal so unless I have vision problems I don’t see ophthalmologist for six months.
Phew. Can’t believe I finally have a normal test of any kind haha.

I have MAC and I have been prescribed Azythro, Rifampin, and Ethambutol. The dosages seems so high, and this is daily (I see others taking this 3 times a week).

Azithromycin - 500mg per day
Ethambutol - 1200mg per day
Rifampin - 600mg per day

Is anyone's treatment amounts similar? So far I am only taking Azythro, I am getting a 2nd opinion tomorrow on this treatment regimen. If anyone has a similar treatment, how did you feel taking all of these on a consistent basis? Still able to work, travel, etc?

These are the standard dosages - and a good protocol to be starting the medications one at a time.
Have you also been advised to get baseline hearing and vision exams?

I dont tolerate the drug regimen very well either, been 6 months so far. The rafampin gives me chest pain and elevates my BP. BOth doctors said full steam ahead. I am asymptomatic, except for short of breathe and fatigue. I want to stop the treatment! I am going to have the conversation about doing active surveillance every 6 months and stop all this. What Vest are you referring to? Just curious

I have the same drug regimen as you and yes i am on it daily. The side effects are worrisome and making me miserable. Getting a 2nd opinion. My Mac was discovered by accident, i am asymptomatic. I am thinking about doing active surveillance with CTs every six months. The fatigue is awful and i am still trying to work. Six months on treatment already.

Hill Rom is the oscilatting vest I use every evening for 20 minutes.

So sorry to hear it's making you miserable. If you don't mind me asking, how old are you?

I was posted the original comment. Updating that my (new) headaches stopped by Day 5 of Ethambutol.

And @circleup, mine also found incidentally (chest CT for baseline cardiac scan) but I was put on treatment pretty quickly b/c of two lesions that he's worried about - we don't want them to progress into holes. No turning back from that. I like to say I'm symptomatic, but I do get burning in my chest and have a very mild evening cough when I lay down. This time around, I have no other external symptoms of illness.

Hi mine are the same as yours. I'm having some changes in my eyesight due to the Ethambutol. I'm only in week 3.5 so it's a bit concerning. I have read that Copper and Chelated Zinc may help as the research states that. I have low energy days and was getting nausea and a sick feeling with the first two Azithromycin and Ethambutol (now on Rifampin too). I have found rubbing organic castor oil on my stomach has really helped.