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Does anyone else have neuropathy?

MAC & Bronchiectasis | Last Active: Jun 9 8:50am | Replies (36)

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@cd33

I experienced tingling in my toes day 1 on ethambutol. It progressed to painful feet where I could hardly walk on and off. The tingling sensation got worse and vibrations started running through my feet. I ended up with my big toe being numb. I had pains in my leg causing it to intermittently give way. Pains in my arms and shoulder clavicle. All in 18 days on the meds big 3. They finally stopped ethambutol but it was suggested 4 months later that maybe something else is going on because ethambutol doesn’t usually cause this until sometime after use ie months into treatment. Sorry I have to disagree. It shows we are all different. The tingling and odd vibrations are still appearing but not as bad now that I’ve stopped but I wonder if it will be permanent. This was definitely from ethambutol. Now into my 5th month of treatment.

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Replies to "I experienced tingling in my toes day 1 on ethambutol. It progressed to painful feet where..."

I experienced neuropathy after about four months on the ethambutol and even then the doctors refused to say it was the ethambutol. I did come off the med and the neuropathy improved but my symptoms weren’t as pronounced as yours. It’s a good sign that it’s gotten a little better and hopefully it will keep getting better. All the best wishes to you.

Ethambutol: As for myself, my doctors don't know whether the numbness in my hands and feet is coming from Ethambutol (400 mg three times a week) or from the EGPA that I was diagnosed with in January. It was then that I had no choice but to go on The big 3 for my MAI that I was holding off on. May I ask what dose you are on?