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Ethambutol

MAC & Bronchiectasis | Last Active: Jul 31 10:21pm | Replies (17)

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@pawster

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.

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Replies to "Weigh you decision carefully on Ethambutol, Rifampin, and Azithromycin. Have regular ear and eye appointments to..."

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.

Appreciate the info. Never heard about check ups with ear doctor. Doc did mention the eye dr. I was on all 3 since April, I was taken off the Rifampin after 2 months.
I take 3x a week and take all pills at once.
I do have pain in my back and no one discussed the airway clearance. I’m working with my pulmonary doctor to add the airway clearance.
I’m finding temperatures over 90 with high humidity make it pretty hard to breathe.
Best thing I can do to push on is exercise.
Appreciate this group!
Prayers to all.