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Does anyone else have neuropathy?
MAC & Bronchiectasis | Last Active: Jun 9 8:50am | Replies (36)Comment receiving replies
I am so glad to see this post, I also have tingling and numbness in my toes. I can’t seem to find shoes that are comfortable and I have achy ankles, knees and hips. It was worse when I was on levequin but it’s still bothersome. I mentioned to my dr. It might be from ethambutol and she said she didn’t think so. I only have 4 month left so she wants to keep me on the ethambutol.
Replies to "I am so glad to see this post, I also have tingling and numbness in my..."
I had the same issues and was told it wasn’t the ethambutol causing the problems but neuropathy is a known side effect of that medicine and I’m convinced that’s what caused mine.
I have numbness in my feet, leg pain and swelling in both legs. I had a wellness check last month and they suggested that I get a new Neurologist and get tested again for Neuropathy even thought the first test said I was negative. I was on the big 3 for 14 months then taken off ethambutol for failing 3 field eye tests. the symptoms are getting worse even thought I have been off ethambutol for 9 months. They have now added Arikacye to the list.
Peripheral neuropathy is a known, although rare, side effect of ethambutol. I was taken off the ethambutol a few months ago after experiencing loss of feeling in both feet, and the numbness has improved a lot (slowly) but I still have pain in my legs as well as some numbness in my upper arms, oddly. I also still have balance issues.
I'm following up with vitamin level testing, etc., but wanted to encourage those who may be experiencing this issue that there can be improvement once you discontinue the drug.
FYI, I'm 70 and run 2 miles a day, so quite active.
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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I like the shoes in the Cosy Feet catalogue.