@linda1334 I don't know how long you've been off the ethambutol, but I had neuropathy from it in my feet. I stopped the drug 9 months ago and finally can say I have *almost* full sensation returned to my feet, right down to between the toes!
@tw508 I got off the ethambutol in October 2024. So it's been over a year now and although it's not quite as bad as it was then, I still have it and I'm figuring this might be the most recovery I can achieve. Great news to hear that you've almost completely recovered though!
@tw508 I got off the ethambutol in October 2024. So it's been over a year now and although it's not quite as bad as it was then, I still have it and I'm figuring this might be the most recovery I can achieve. Great news to hear that you've almost completely recovered though!
@linda1334
I developed numbness in my feet after 3 months and 12 days on ethambutol. Unfortunately my care team didn’t think it was caused bythe antibiotics. Several weeks later I had developed optic neuropathy. Both progressed after I took myself off ethambutol. A neurologist told me they don’t know how to fix nerves.
@linda1334
I developed numbness in my feet after 3 months and 12 days on ethambutol. Unfortunately my care team didn’t think it was caused bythe antibiotics. Several weeks later I had developed optic neuropathy. Both progressed after I took myself off ethambutol. A neurologist told me they don’t know how to fix nerves.
@sma2 I'm so sorry to hear that you developed optic neuropathy in addition to the neuropathy in your feet! That's awful. Unfortunately the ethambutol is very toxic to a lot of people. My doctor never stressed all the possible side effects to look out for so I didn't realize early on that the weird feeling (neuropathy) in my feet might be caused by the drug until much later. My neurologist also told me there is nothing that can be done for neuropathy and I just have to wait to see if it gets better slowly. That's why I'm in a watch and wait mode right now. My MAC came back 3 months after I stopped the drug therapy after 16 months even though I was MAC free per my bronch results after 3 months on meds. Now twice a day I'm nebulizing 7% saline and I use an Afflo vest. I actually feel pretty good thankfully and can exercise on my treadmill quite vigorously without getting winded. I'm hoping I may be one of the lucky 25% according to some studies that are able to kick the MAC this way. We'll see.
@sma2 I'm so sorry to hear that you developed optic neuropathy in addition to the neuropathy in your feet! That's awful. Unfortunately the ethambutol is very toxic to a lot of people. My doctor never stressed all the possible side effects to look out for so I didn't realize early on that the weird feeling (neuropathy) in my feet might be caused by the drug until much later. My neurologist also told me there is nothing that can be done for neuropathy and I just have to wait to see if it gets better slowly. That's why I'm in a watch and wait mode right now. My MAC came back 3 months after I stopped the drug therapy after 16 months even though I was MAC free per my bronch results after 3 months on meds. Now twice a day I'm nebulizing 7% saline and I use an Afflo vest. I actually feel pretty good thankfully and can exercise on my treadmill quite vigorously without getting winded. I'm hoping I may be one of the lucky 25% according to some studies that are able to kick the MAC this way. We'll see.
@linda1334
It seems many NTM care providers do not know numbness is a serious ethambutol side effect even though it was first mentioned in 1972 and in a 2016 article in Chest Journal "Killing Two Nerves with One Drug: The Ethambutol Way". O was not warend about the dangers of ethambutol to vision oonly that vision loss was rare (1-2%) and reversible. Probably higher % and only sometimes reversible. I developed while being treated for MAC and am currently on on therapy. I have enough challenges dealing with ethambutol side effects from the last round. I have three major health issues but only two, vision loss and peripheral neuropathy, affect me on a daily basis. NTM is more of a constant worry. We aptients need some standardized treatment protocols including more information about side effects and best practices in regard to vison screening. NTM care providers seem to be "all over the map".
@linda1334
It seems many NTM care providers do not know numbness is a serious ethambutol side effect even though it was first mentioned in 1972 and in a 2016 article in Chest Journal "Killing Two Nerves with One Drug: The Ethambutol Way". O was not warend about the dangers of ethambutol to vision oonly that vision loss was rare (1-2%) and reversible. Probably higher % and only sometimes reversible. I developed while being treated for MAC and am currently on on therapy. I have enough challenges dealing with ethambutol side effects from the last round. I have three major health issues but only two, vision loss and peripheral neuropathy, affect me on a daily basis. NTM is more of a constant worry. We aptients need some standardized treatment protocols including more information about side effects and best practices in regard to vison screening. NTM care providers seem to be "all over the map".
@sma2 Unfortuately, many of us bronchiectasis and MAC patients have had to learn on our own. When I was first diagnosed in 2022, my doctor said I needed to do airway clearance but didn't specify how or any special techniques so I thought he just meant coughing. I wish I had known true airway clearance techniques back then because I if I had been doing it properly, it might have prevented my recurrance. Thank goodness for this forum and the wonderful people here who share information. Had I not found it, I might still not know proper airway clearance techniques and everything else we need to do.
@linda1334
I developed numbness in my feet after 3 months and 12 days on ethambutol. Unfortunately my care team didn’t think it was caused bythe antibiotics. Several weeks later I had developed optic neuropathy. Both progressed after I took myself off ethambutol. A neurologist told me they don’t know how to fix nerves.
@sma2 this is interesting to me as I have been on the ethambutol close to 6 months and just noticed that my heel area on both feet are numb with the left being worse than the right. I have been going to the eye doctor's every 2-3 months for my eyes but just noticed this numbness recently.
@sma2 Unfortuately, many of us bronchiectasis and MAC patients have had to learn on our own. When I was first diagnosed in 2022, my doctor said I needed to do airway clearance but didn't specify how or any special techniques so I thought he just meant coughing. I wish I had known true airway clearance techniques back then because I if I had been doing it properly, it might have prevented my recurrance. Thank goodness for this forum and the wonderful people here who share information. Had I not found it, I might still not know proper airway clearance techniques and everything else we need to do.
@linda1334
Are you a member of one of the NTMir support groups? I've found the support group to be helpful and NTMir provides a lot of information. I learn a bunch from the conferences they have in May, zoom and in person. Airway clearance techniques is always a popular topic.
@linda1334
Are you a member of one of the NTMir support groups? I've found the support group to be helpful and NTMir provides a lot of information. I learn a bunch from the conferences they have in May, zoom and in person. Airway clearance techniques is always a popular topic.
@sma2 See your doctors d, if they dismiss it as not important, refer them to Chest Journals “Killing Two Nerves with One Drug: The Ethambutol Way”.Peripheral neuropathy is nasty.
@sma2 this is interesting to me as I have been on the ethambutol close to 6 months and just noticed that my heel area on both feet are numb with the left being worse than the right. I have been going to the eye doctor's every 2-3 months for my eyes but just noticed this numbness recently.
@cch209 If you have any numbness, it is very important to tell your doctor and get evaluated by a neurologist. Don't wait too long. It reverses for some people when they stop ethambutol but not for everyone. Perhaps your doctor can switch your med to something different.
@linda1334
Are you a member of one of the NTMir support groups? I've found the support group to be helpful and NTMir provides a lot of information. I learn a bunch from the conferences they have in May, zoom and in person. Airway clearance techniques is always a popular topic.
@sma2 No, I'm not currently a member. I see on their website that they have two in Los Angeles, CA but I don't see one in Orange County where I'm located. The LA group would probably work. Thanks for mentioning and I'll look into it.
Connect
Connect
Like
Helpful
Hug
@tw508 I got off the ethambutol in October 2024. So it's been over a year now and although it's not quite as bad as it was then, I still have it and I'm figuring this might be the most recovery I can achieve. Great news to hear that you've almost completely recovered though!
@linda1334
I developed numbness in my feet after 3 months and 12 days on ethambutol. Unfortunately my care team didn’t think it was caused bythe antibiotics. Several weeks later I had developed optic neuropathy. Both progressed after I took myself off ethambutol. A neurologist told me they don’t know how to fix nerves.
-
Like -
Helpful -
Hug
1 Reaction@sma2 I'm so sorry to hear that you developed optic neuropathy in addition to the neuropathy in your feet! That's awful. Unfortunately the ethambutol is very toxic to a lot of people. My doctor never stressed all the possible side effects to look out for so I didn't realize early on that the weird feeling (neuropathy) in my feet might be caused by the drug until much later. My neurologist also told me there is nothing that can be done for neuropathy and I just have to wait to see if it gets better slowly. That's why I'm in a watch and wait mode right now. My MAC came back 3 months after I stopped the drug therapy after 16 months even though I was MAC free per my bronch results after 3 months on meds. Now twice a day I'm nebulizing 7% saline and I use an Afflo vest. I actually feel pretty good thankfully and can exercise on my treadmill quite vigorously without getting winded. I'm hoping I may be one of the lucky 25% according to some studies that are able to kick the MAC this way. We'll see.
@linda1334
It seems many NTM care providers do not know numbness is a serious ethambutol side effect even though it was first mentioned in 1972 and in a 2016 article in Chest Journal "Killing Two Nerves with One Drug: The Ethambutol Way". O was not warend about the dangers of ethambutol to vision oonly that vision loss was rare (1-2%) and reversible. Probably higher % and only sometimes reversible. I developed while being treated for MAC and am currently on on therapy. I have enough challenges dealing with ethambutol side effects from the last round. I have three major health issues but only two, vision loss and peripheral neuropathy, affect me on a daily basis. NTM is more of a constant worry. We aptients need some standardized treatment protocols including more information about side effects and best practices in regard to vison screening. NTM care providers seem to be "all over the map".
@sma2 Unfortuately, many of us bronchiectasis and MAC patients have had to learn on our own. When I was first diagnosed in 2022, my doctor said I needed to do airway clearance but didn't specify how or any special techniques so I thought he just meant coughing. I wish I had known true airway clearance techniques back then because I if I had been doing it properly, it might have prevented my recurrance. Thank goodness for this forum and the wonderful people here who share information. Had I not found it, I might still not know proper airway clearance techniques and everything else we need to do.
@sma2 this is interesting to me as I have been on the ethambutol close to 6 months and just noticed that my heel area on both feet are numb with the left being worse than the right. I have been going to the eye doctor's every 2-3 months for my eyes but just noticed this numbness recently.
@linda1334
Are you a member of one of the NTMir support groups? I've found the support group to be helpful and NTMir provides a lot of information. I learn a bunch from the conferences they have in May, zoom and in person. Airway clearance techniques is always a popular topic.
-
Like -
Helpful -
Hug
2 Reactions@sma2 See your doctors d, if they dismiss it as not important, refer them to Chest Journals “Killing Two Nerves with One Drug: The Ethambutol Way”.Peripheral neuropathy is nasty.
@cch209 If you have any numbness, it is very important to tell your doctor and get evaluated by a neurologist. Don't wait too long. It reverses for some people when they stop ethambutol but not for everyone. Perhaps your doctor can switch your med to something different.
@sma2 No, I'm not currently a member. I see on their website that they have two in Los Angeles, CA but I don't see one in Orange County where I'm located. The LA group would probably work. Thanks for mentioning and I'll look into it.