1. < MAC & Bronchiectasis

Does anyone else have neuropathy?

Posted by diane47 @diane47, Jan 27, 2024

I had mild neuropathy when I started treatment for MAC. Then the neuropathy got worse and the Dr thought the Ethabutol might be making it worse, so stopped the Ethambutol. The neuropathy has continued to get worse. I can still walk with a walking stick for about 20 minutes max and I just wonder if anyone else has had this problem? Thanks!

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rbl | @rbl | Jun 4 11:40am
In reply to @tw508 "Peripheral neuropathy is a known, although rare, side effect of ethambutol. I was taken off the..." + (show)
@tw508

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.

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Thank you, I’ve been off meds for a year and it’s not as bad but still uncomfortable and annoying.

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cd33 | @cd33 | Jun 5 10:15am
In reply to @rbl "I am so glad to see this post, I also have tingling and numbness in my..." + (show)
@rbl

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.

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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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2 replies
lvalenti | @lvalenti | Jun 6 4:14pm
In reply to @cd33 "I experienced tingling in my toes day 1 on ethambutol. It progressed to painful feet where..." + (show)
@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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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.

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1 reply
diane47 | @diane47 | Jun 6 5:51pm
In reply to @lvalenti "I experienced neuropathy after about four months on the ethambutol and even then the doctors refused..." + (show)
@lvalenti

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.

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Good to hear your experience. I completed the Big 3 over a year ago. Well, "Big 3" is not accurate because about 6 months in my neuropathy in my feet and legs got worse, so the doctor stopped the Ethambutol and I continued with the other 2 antibiotics. In March 2024 I passed a sputum test with no MAC. The neuropathy "may" be getting a bit better, but it is hard to say because I have some oestheoarthritis in my knees and hips. On the whole I would say the antibiotic treatment was a good thing, though I also believe that the MAC may never resolve completely. I also have bronchiecstasis, which often goes with MAC. I had some neuropathy before the antibiotic treatment, but it definitely got worse when I took the Ethambutol. I hope you are feeling better!

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happyhealthyme | @happyhealthyme | Jun 8 7:05pm
In reply to @cd33 "I experienced tingling in my toes day 1 on ethambutol. It progressed to painful feet where..." + (show)
@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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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?

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1 reply
cd33 | @cd33 | Jun 9 8:50am
In reply to @happyhealthyme "Ethambutol: As for myself, my doctors don't know whether the numbness in my hands and feet..." + (show)
@happyhealthyme

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?

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Hi there you are on a low dose of ethambutol but that doesn’t mean it’s still not the ethambutol, the only way you will know is to stop taking it! I was on 1600mg three times a week. 4 tablets @ 400mg each on each of the three days. Plus 600mg rifampicin and 500 of Azithromycin.

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