Peripheral neuropathy recurrence after stopping ethambutol

Posted by tw508 @tw508, 1 day ago

I was on ethambutol as part of Big 3 treatment for MAC for a year with no side effects. The MAC returned a couple of years later and I restarted the big 3. This time, however, I experienced peripheral neuropathy in both feet. I was taken off ethambutol and the neuropathy almost completely went away over the course of about 6 months. I'm off all MAC treatment currently.
Now, however, without restarting the ethambutol, the neuropathy has returned, and rather quickly. I cannot find any reports of flare-ups without restarting the drug.
Has anyone else had a return of neuropathy without restarting ethambutol?

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joyeous | @joyeous | 19 hours ago

Are you sure the neuropathy was caused by the ethambutol?

tw508 | @tw508 | 11 hours ago

The timing was rather convincing, so I do think the initial neuropathy was due to the ethambutol (and it is a known, if somewhat rare, side effect). My ID doc agrees. The fact that it subsided when I quit taking the drug is further evidence.
However, it is possible that the recurrence has another cause. Which is why I put the question into the universe - i.e., has it happened to anyone else here - since this group is quite experienced!