Discussions
Discussions
Has anyone had nerve damage from Ethambutol?
I started NTM treatment with the "big 3" but had to stop the Ethambutol in the first month because my hands and feet started getting numb. I understand the damage is often temporary, but after 30+ days off the Ethambutol, they haven't gotten better. It's not painful, just annoying and uncomfortable. For example, when my hands get cold now, I get a burning sensation.
Has anyone else experience this and did the sensations go back to normal after some time off the Ethambutol? How long did it take?
Replies
Merry, that sounds really uncomfortable. I am curious as well if other people experience this sort of side effect from the Ethambutol. How long after you stopped taking it did the numbness subside? Was it immediate?
Hi Merry,
Sorry you are dealing with the numbness still. I hope all is better soon. I've been on Ethambutol since August of 2015. I didnt know that nerve damage is one of the side effects. Good to know.
I have never heard of this.
The side effects list says that nerve damage is one of those "rare but serious" ones.
http://www.webmd.com/drugs/2/drug-8082/ethambutol-...
Nerve damage can happen peripherally (hands and feet) or even in the eye. My doc had me do a baseline eye exam before starting the drug, a daily simple screening at home for color blindness and then back to the eye doc for regular checks.
My eye doctor had never had a patient on Ethambutol before and I had to convince him that I did NOT have TB and was NOT contagious. :)
Hello. I was on Ethambutol from 2018-2019, but after hitting the year point I developed a numb sensation in my feet & legs. My Pulmonologist had told me to watch for such symptoms, so when it started she pulled me off the Ethambutol immediately, tests run, & I was diagnosed with Small Fiber Neuropathy. I was then put on a different medication to finish off my treatment. Now the doctors avoid putting me on Ethambutol if possible. I still have the neuropathy.
Bren,
I am so sorry to read about your neuropathy. I am glad that your doctor did alert you of the possible symptoms.
Sharing your experience with others may help another person who was not informed of the posside effects by their doctor.
Comments
JohnL,
I am so sorry to read about your negative effects of Ethambutol and the sad reality that your doctor had no idea if the dangers on this drug.Close ongoing monitoring must be done while on this drug- reporting changes to a doctor who is experienced with this drug is so important.
More education is now being done to educate doctors on NTM and the drug treatments worldwide.
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