Key Ethambutol Takeaways for Patients From My Experience
• Ethambutol can cause severe, permanent, and sometimes progressive vision loss.
• Vision monitoring should include a baseline examination and frequent follow-up. The medical literature often recommends screening every 1–2 months and notes that ethambutol-induced optic neuropathy (EON) can occur within the first month, most commonly between 3–5 months, but at any time.
• Ophthalmologists may not always recognize ethambutol toxicity, highlighting the need for standardized testing and clear communication between providers.
• Numbness or tingling in the hands or feet is a serious warning sign that can precede vision loss and should prompt immediate medical evaluation and reconsideration of ethambutol therapy.
• Patient self-checks alone are not sufficient to detect early vision damage.
Key Ethambutol Takeaways for Patients From My Experience
• Ethambutol can cause severe, permanent, and sometimes progressive vision loss.
• Vision monitoring should include a baseline examination and frequent follow-up. The medical literature often recommends screening every 1–2 months and notes that ethambutol-induced optic neuropathy (EON) can occur within the first month, most commonly between 3–5 months, but at any time.
• Ophthalmologists may not always recognize ethambutol toxicity, highlighting the need for standardized testing and clear communication between providers.
• Numbness or tingling in the hands or feet is a serious warning sign that can precede vision loss and should prompt immediate medical evaluation and reconsideration of ethambutol therapy.
• Patient self-checks alone are not sufficient to detect early vision damage.
I got neuropathy from the Ethambutol. I was on it for 16 months and thought I felt something weird in my feet but didn't make the connection until later. Had to go to a neurologist and get EMGs on all extremities. It was worse in my feet. My arms and hands recovered when the Ethambutol was discontinued. But it seems like the neuropathy in my feet is permanent. The neurologist said it's sensory though rather than motor thankfully so no problems walking. I was also having problems with the field vision test at the opthalmologist but that got better also when I stopped the medication.
@jjudah If you are huffing or blowing hard enough to cause hemorrhage, you are definitely doing it too hard. Please watch all the videos you can find - you will not see anyone using that level of effort. Doing this repeatedly can also cause damage to vocal chords, throat and airways - exactly the opposite of what we hope to accomplish with airway clearance.
@jjudah If you are huffing or blowing hard enough to cause hemorrhage, you are definitely doing it too hard. Please watch all the videos you can find - you will not see anyone using that level of effort. Doing this repeatedly can also cause damage to vocal chords, throat and airways - exactly the opposite of what we hope to accomplish with airway clearance.
@jjudah Here is an older National Jewish Health (NJH) Webinar by Dr Pamela McShane, one of the experts in airway clearance. It not only demonstrates some techniques, but also explains the reason we need to do it, and some of the physiology. It is long, but well worth watching: https://www.youtube.com/watch
Once you are on YouTube, other airway clearance videos will show up in the feed.
I got neuropathy from the Ethambutol. I was on it for 16 months and thought I felt something weird in my feet but didn't make the connection until later. Had to go to a neurologist and get EMGs on all extremities. It was worse in my feet. My arms and hands recovered when the Ethambutol was discontinued. But it seems like the neuropathy in my feet is permanent. The neurologist said it's sensory though rather than motor thankfully so no problems walking. I was also having problems with the field vision test at the opthalmologist but that got better also when I stopped the medication.
@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!
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Key Ethambutol Takeaways for Patients From My Experience
• Ethambutol can cause severe, permanent, and sometimes progressive vision loss.
• Vision monitoring should include a baseline examination and frequent follow-up. The medical literature often recommends screening every 1–2 months and notes that ethambutol-induced optic neuropathy (EON) can occur within the first month, most commonly between 3–5 months, but at any time.
• Ophthalmologists may not always recognize ethambutol toxicity, highlighting the need for standardized testing and clear communication between providers.
• Numbness or tingling in the hands or feet is a serious warning sign that can precede vision loss and should prompt immediate medical evaluation and reconsideration of ethambutol therapy.
• Patient self-checks alone are not sufficient to detect early vision damage.
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3 ReactionsIt depends on the genes.
@sma2 My ophthalmologist has told me that I had a "saggy" right optic nerve caused by the Ethambutol. Thankfully it has not impacted my vision.
@brigi Shaggy not saggy.
I got neuropathy from the Ethambutol. I was on it for 16 months and thought I felt something weird in my feet but didn't make the connection until later. Had to go to a neurologist and get EMGs on all extremities. It was worse in my feet. My arms and hands recovered when the Ethambutol was discontinued. But it seems like the neuropathy in my feet is permanent. The neurologist said it's sensory though rather than motor thankfully so no problems walking. I was also having problems with the field vision test at the opthalmologist but that got better also when I stopped the medication.
Speaking of eye damage….has anyone experienced a ‘subconjunctoval hemorrhage’ in their eye? Maybe from the flutter valve and huffing?
JJ
@jjudah If you are huffing or blowing hard enough to cause hemorrhage, you are definitely doing it too hard. Please watch all the videos you can find - you will not see anyone using that level of effort. Doing this repeatedly can also cause damage to vocal chords, throat and airways - exactly the opposite of what we hope to accomplish with airway clearance.
@sueinmn
Thanks! I have not watched a video as I have not been doing this for very long. I will definitely do that!
JJ
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1 Reaction@jjudah Here is an older National Jewish Health (NJH) Webinar by Dr Pamela McShane, one of the experts in airway clearance. It not only demonstrates some techniques, but also explains the reason we need to do it, and some of the physiology. It is long, but well worth watching: https://www.youtube.com/watch
Once you are on YouTube, other airway clearance videos will show up in the feed.
-
Like -
Helpful -
Hug
3 Reactions@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!