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Profile picture for linda1334 @linda1334

@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.

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Replies to "@sma2 I'm so sorry to hear that you developed optic neuropathy in addition to the neuropathy..."

@linda1334
It seems many NTM care providers do not know numbness is a serious ethambutol side effect even though it was first mentioned in 1972 and in a 2016 article in Chest Journal "Killing Two Nerves with One Drug: The Ethambutol Way". O was not warend about the dangers of ethambutol to vision oonly that vision loss was rare (1-2%) and reversible. Probably higher % and only sometimes reversible. I developed while being treated for MAC and am currently on on therapy. I have enough challenges dealing with ethambutol side effects from the last round. I have three major health issues but only two, vision loss and peripheral neuropathy, affect me on a daily basis. NTM is more of a constant worry. We aptients need some standardized treatment protocols including more information about side effects and best practices in regard to vison screening. NTM care providers seem to be "all over the map".