Peripheral neuropathy recurrence after stopping ethambutol

Are you sure the neuropathy was caused by the ethambutol?

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!

I got neuropathy from the ethambutol in both feet as well. I didn't realize it was from the drug for quite some time. When I finally did and reported it to my doctor, although the drug was stopped, the neuropathy did not go away. It's been over a year and I still have it unfortunately. Feels like walking on gravel when I'm barefoot. When I have shoes or socks on, it feels normal.

Thank you for responding. I guess I'd describe mine as sandpapery-feeling? It still feels that way through my socks, but seems fine with shoes on.
The odd thing for me is that it seemed to almost disappear (only some numbness between my toes) by about 4 months after stopping the drug, but started reappearing a few months later (increased numbness between toes, and along the soles as well). Perhaps a different cause?

@tw508
From AI
Yes, peripheral neuropathy in the feet can persist for a period after stopping Ethambutol. While this adverse effect often reverses upon stopping the medication, recovery can be slow, and in some cases, the neuropathy may take months to resolve or, in rare instances, become permanent.Key details regarding ethambutol-induced neuropathy include:Reversibility: Studies indicate that ethambutol-induced peripheral neuropathy generally regresses—or begins to return to baseline—once the medication is discontinued.Persistent Symptoms: Some patients report that symptoms continue, or even recur, over a year after ceasing the medication. This can present as lingering numbness, burning, or a "sandpapery" feeling in the feet.Temporary Worsening: Occasionally, symptoms may temporarily worsen after stopping the drug before they begin to improve.Delayed Improvement: Similar to ethambutol-induced optic neuropathy, peripheral neuropathy symptoms may take several months to improve after the medication is halted.Other Factors: The risk of persistent neuropathy is higher if the damage was severe or if the medication was taken for a long duration.

It seems this can be long lasting. I got neuropathy 5 hours after first dose of 1600 mg. I left it for another few days before my foot started getting vibrations throughout and in the end my big toe was numb. After 18 days they stopped the ethambutol. My big toe is still numb and I continued to get tingling remaining in the other 3 drugs. I’m off all now and the tingling has stopped but the big toe remains numb.

I did 40 months of ethambutol and have been off for 3 years but persistent neuropathy as you all describe still exists

The B vitamins (B1, B5, B6, B12) really help with neuropathy, combined with exercise, but it's not overnight.
Best wishes of great health to all of us!

Thanks, I was going to ask my PCP for a B12 level to be drawn! And, since I live in the Pacific Northwest, I already eat a lot of salmon, haha.

@cd33 This is helpful, although I wish the AI had provided citations for its conclusions, particularly the one about recurrence. I guess the way to approach the summary is to view it the same way I view patient-reported outcomes - YMMV (your mileage may vary)!
I admit to being quite stubborn about using AI (for a number of reasons), so I use search patterns that specifically avoid AI, although that's getting harder and harder to do.

Very true, but it is going to be hard to avoid, it’s our future. As for citations, I could probably have asked for much more info. I just sent the buts I already knew from my own experiences and would have commented on. It was just quicker to copy and paste, sorry!
It shows that this neuropathy can start very early and also after some length of time. My doctors have tried to disprove I had neuropathy so soon after starting. I know 100% this was from the medication.