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@linda1334
I developed numbness in my feet after 3 months and 12 days on ethambutol. Unfortunately my care team didn’t think it was caused bythe antibiotics. Several weeks later I had developed optic neuropathy. Both progressed after I took myself off ethambutol. A neurologist told me they don’t know how to fix nerves.

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Replies to "@linda1334 I developed numbness in my feet after 3 months and 12 days on ethambutol. Unfortunately..."

@sma2 I'm so sorry to hear that you developed optic neuropathy in addition to the neuropathy in your feet! That's awful. Unfortunately the ethambutol is very toxic to a lot of people. My doctor never stressed all the possible side effects to look out for so I didn't realize early on that the weird feeling (neuropathy) in my feet might be caused by the drug until much later. My neurologist also told me there is nothing that can be done for neuropathy and I just have to wait to see if it gets better slowly. That's why I'm in a watch and wait mode right now. My MAC came back 3 months after I stopped the drug therapy after 16 months even though I was MAC free per my bronch results after 3 months on meds. Now twice a day I'm nebulizing 7% saline and I use an Afflo vest. I actually feel pretty good thankfully and can exercise on my treadmill quite vigorously without getting winded. I'm hoping I may be one of the lucky 25% according to some studies that are able to kick the MAC this way. We'll see.

@sma2 this is interesting to me as I have been on the ethambutol close to 6 months and just noticed that my heel area on both feet are numb with the left being worse than the right. I have been going to the eye doctor's every 2-3 months for my eyes but just noticed this numbness recently.