Ethambutol

@tinaesims When I was on the meds I was on a total of 500mg of Ethambutol daily (two in the morning and three at night). They were 100mg tablets. They are based on your weight. Mine were based on me being at 80 pounds. I had lost 18% of my normal body weight.

Thanks that helps. I hope you have gained some of your weight back.

@tinaesims God knows I try! When my appetite is good I eat lots! One of my children brought me a large container of frozen yogurt from some takeout place on his way home from work. Yum!

Hi, This is just my experience, probably your doc has already given you warnings. It is helpful to have hearing and vision tests done as a base line for future comparisons, in case there is side effects from the meds.
I was taking azithromycin, ethambutol and rifampin three times a week (June 2018-June 2019). During the treatment I had ophthalmologist monitoring my vision. About the 11th month of treatment, I was warned with diminished vision field. I also lost a lot of weight. At that point I was free of mycobacteria (sputum test) for more than 14 months (I was germ free when I started treatment). My treatment was stopped even my lung doc would like me to take the med for 4 more months. Then was referred to a neurologist (specialty in eyes), went through head and neck MRI to rule out any tumors. It seems not everyone would have this kind of side effect. There is no treatment, however, sometimes it is reversible after stopping the med. It could take up to 9 months. I'm off the med 3 months now, will go back to visit the neurologist in March 2020. Hope the damage is reversible!
Have a nice weekend.

Why did you start if you were germ free?

Showed positive sputum test 2017-2018 on and off. 2018 March and June showed negative results, however, was advised to start treatment.

Weigh you decision carefully on Ethambutol, Rifampin, and Azithromycin. Have regular ear and eye appointments to monitor yourself, no matter what the pulmonologist says. They each are wonderful doctors, yet "they only know one part of the elephant." There are no clear answers, but you are the captain of the ship. Be positive. Do your best. That's all we can do.
My Ethambutol and Rifampin Story: I took Ethambutol for 12 months approximately 10 years ago along with Azithromycin and Rifampin. It wasn't pleasant but I got through it.
Five months ago I was put back on the BIG 3. . At the time of starting the drugs I asked my doctor about being tested regularly for my vision and hearing. "Oh that's not really a big deal as they use to think; no worries." Silly me, I took his word for it rather than driving myself crazy online. Well, I regret that. I went for my yearly eye exam two days ago. The opthamologist noted a problem with my optic nerve. He quietly freaked out in my mind. I'm now lined up for 7 different tests, etc. to see if I have optic nerve damage and the extend and if it progresses. He was surprised I hadn't come in for regular visits as I did 10 years ago, as soon as I was placed on Ethambutol again. My dilemma now. Lungs, Eyes, Lungs, Eyes. I'll talk to my pulmonologist week and I have no idea what this means. Going forth boldly and keeping my eyes wide open. Check everything for yourself yet don't be paranoid. Hard to do sometimes.
Coincidentally I had been told I could go off the Rifampin from my pulmonologist a couple weeks ago due to severe intestinal problems along with losing an unhealthy amount of weight.

I was on the big 3 for 9 months, then my eye dr took me off ethambutol as I failed 3 eye view tests. After being off ethambutol for 3 months I could pass the eye view test. I have now been put on arikayce and have breathing problems where I have to stop what I am doing to catch my breath. I see my dr next week.

Mg pulmonologist told me to have regular checkups with eye and ear docs. Have also had the LFT. So far eyes and ears have had no changes. (Only been on for 6 months) My optometrist said to come in every six months instead of annually unless I am noticing problems. No hearing aids yet either. Luckily I had a base line hearing test a year ago. I hate taking any medicine so these three have been a big deal. So far so good. Thanks for the heads up though.