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Does anyone have side effects, like eye damage, from Ethambutol?
MAC & Bronchiectasis | Last Active: Jan 10 10:50pm | Replies (40)Comment receiving replies
@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".
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@sma2 Unfortuately, many of us bronchiectasis and MAC patients have had to learn on our own. When I was first diagnosed in 2022, my doctor said I needed to do airway clearance but didn't specify how or any special techniques so I thought he just meant coughing. I wish I had known true airway clearance techniques back then because I if I had been doing it properly, it might have prevented my recurrance. Thank goodness for this forum and the wonderful people here who share information. Had I not found it, I might still not know proper airway clearance techniques and everything else we need to do.