Does anyone else have neuropathy?

Thank you Sue. This response regarding the dosage is the first time I’ve realized the dosages could be different for daily vs 3 times weekly. I was considering asking my new Dr who I start with next week about switching to 3 days but if it’s for a higher dose that gives me pause.

Feel free to discuss the dosage issue with the doctor, some can be very accommodating.
I will tell you, having taken the antibiotics both 3 times weekly and daily, that three times was light-years easier for me in spite of the slightly higher dose.
Good luck.

Hi Sue. Just dx with MAC. Getting ready to start the 3x/wk treatment with the 3 drugs. Is that what you took. I am very scared.

Yes, I took the Big 3, 3 times a week. All went well, except that after about 6 months my pre-existing neuropathy got worse and the doctor dropped the Ethambutol. I had regular check ups for vision and heart and hearing. I hope you feel better soon.

Hi, I had Neuropathy while taking the big 3 for over 4 years but didn't know it until I beat MAC at age 77! I had to get off Ethambutol because of eye problems but was on the other two plus Arycase (sp). I still have Neuropathy and it is getting worse in my feet mainly, and will have for ever but it is my age most likely. I can't say MAC gave me Neuropathy as I was probably was on my way to having it anyway. I don't know your age but with me being old I was a good candidate. But I want you to know that at 77 I beat MAC which shows you can do it at any age. Stay positive and keep fighting. I know how hard it is but it is worth the fight!!

Im sorry to be reading this post so late, but I recently ran into trouble with the neuropathy. I fractured my foot and I still don't know ow how it happened. Im wearing a boot. The doctor said it is painful. I don't feel it. My thumbs have gone partially numb in the past week. I think this is happening from the ethambotol. When I called the doctors office they so it wasn't from the drugs and to go to the ER. I don't know who to turn to for help. Any suggestions will be appreciated.

Hi, do what the doctor said. Go to the ER if you can’t see the doctor who put you on ethambutol originally. I don’t know if fracturing your foot is the cause of ethambutol but not feeling the pain is questionable along with numbness, burning, vibration sensation and tingling can be from ethambutol, having had all of those mentioned from that drug and when stopped taking, symptoms disappeared, leaving some permanent numbness. You must see a specialist.
Interested to know how long you have been on ethambutol for?

I've been on ethambotol for 10 months. The ID doctor is the one who put me on it. He's the one I contacted but his assistant fielded the question. She told me to go to the ER. Im going to my regular doctor Saturday. He has been the one to deal with neuropathy in the past. It's just that it's changed very fast on me in the past 4 weeks.

Hi. Yes, I got neuropathy after being on the big 3 3x per week for 16 months. Not sure exactly at what point it started but it kept getting worse to the point that I told my doctor it was really bothering me and keeping me up at night. I had to quit the drugs because of it but he gave me the okay thinking I was negative. Two months later I submitted a sputum sample and the MAC was back or was never gone. The doctor thought the ethambutol and possibly the rifampin also contributed to the neuropathy. I was then put on an every day therapy of azithromycin, rifabutin and Arikayce, but I only got through the first two and a half weeks on the first two drugs before I had to quit because the gastro symptoms were so bad. I still have neuropathy in my feet but after I quit the big 3, the neuropathy that started in my hands and arms went away. I also have hearing loss from the azithromycin. I would suggest you go to a neurologist for a consult. Tell them about the drugs you were on and how long. They can do an EMG to evaluate the extent of the neuropathy. Wishing you good luck.