@nancysh Hello Nancy,
Yes, I agree, as a person who depends on her vision for everything, I was very concerned about ethambutol. When I had my pre-medication eye appointment with my ophthalmologist, I expressed my concern. She told me she monitors people taking ethambutol VERY closely, with a thorough baseline exam, then at 3 months, and every 6 months after that. In over 30 years, she said she had only 2 patients with a problem, even though it is used a lot in our community because we have a large immigrant population prone to TB (the other main use for the med.) She told me to stop the medication and call immediately if I had changes in vision or eye pain, and she would see me right away - I trusted her, and that set my mind at ease. I took ethambutol for over 18 month, 6 months of that was daily, and did not have an issue.
Remember, all drugs, even "safe" over-the-counter meds like antacids, can have side effects. It is a matter of deciding whether the benefit of treatment outweighs the risk.
Have you scheduled an eye exam?
Thank you so much for this info, Sue. I just started the three drugs and had had an eye exam July 3. My doc thought that was ok. I depend on having good color vision for my restoration job so it is very important to me.
Hi I am Jane and I had to get off Ethambutal do to eye problems. I couldn't pass the vision view test 3 times. My eye doctor took me off it immediately. After 3 months off the medication I could pass it with no problems. Hope this helps. I continued with Rifampin and Azithromycin.
Hi I am Jane and I had to get off Ethambutal do to eye problems. I couldn't pass the vision view test 3 times. My eye doctor took me off it immediately. After 3 months off the medication I could pass it with no problems. Hope this helps. I continued with Rifampin and Azithromycin.
Hi. I am Greg and have been taking the big 3 since March 2024, first at three times a week then daily since last September. About 2 weeks ago I started having vision problems in my left eye. It's like there is a constant glare in my vision. I went to an eye doctor who has been monitoring my vision but he couldn't find anything wrong but he referred me to another ophthalmologist specializing in toxicity. Was your eye problem like mine?
I believe my problem was different then yours. I didn't notice a vision problem until I couldn't pass the field vision test, which I failed 3 times. After being off Ethambutol for 3+ months I passed with no problem. I have heard that my problem is just one of a few different problems that Ethambutol causes. You might want to see an optometrist specialist or reach out to the major MAC hospitals. Your eyesight is so important, I hope you can find a good professional.
I am very much interested in this topic. I started the big 3 on Nov. 25, 2024. I had vision work up that included field of vision test on 12/2/24.
About 3 weeks ago I noticed bad glare trying to read or watch TV. I had a follow up appointment with optometrist on 1/15/2025 and was told everything looks good. No reduction in peripheral vision. He did not see a reason nor had any of his other patients had this problem. If any of you have experienced this would you please tell me what was the cause if any case was was found. Losing my vision was my biggest fear on these medications. I might add that the ID doc said he would be more concerned with rifampin on the liver..
Thanks for any help or insight any of you can give me.
Additional info: I was diagnosed with a biopsy of nodules and a bronchial wash.
Mycobacterium avium intracellulare (MAI)
I have dry cough, shortness of breath & heavy feeling in my lungs. Nodules found on CT. They are not cancerous. Was told I had a lot of mucus in my lungs.
I have never coughed anything up.
Just discovered optic nerve neuropathy in left eye from Ethambutol toxicity.
Having my hearing tested next. Stopping meds.
I have been on clarithromycin ER tabs 500 mg, One tab,and Ethambutol HCL 400 mg , 4 tabs, every Monday, Wednesday and Friday For almost one year.
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@nancysh Hello Nancy,
Yes, I agree, as a person who depends on her vision for everything, I was very concerned about ethambutol. When I had my pre-medication eye appointment with my ophthalmologist, I expressed my concern. She told me she monitors people taking ethambutol VERY closely, with a thorough baseline exam, then at 3 months, and every 6 months after that. In over 30 years, she said she had only 2 patients with a problem, even though it is used a lot in our community because we have a large immigrant population prone to TB (the other main use for the med.) She told me to stop the medication and call immediately if I had changes in vision or eye pain, and she would see me right away - I trusted her, and that set my mind at ease. I took ethambutol for over 18 month, 6 months of that was daily, and did not have an issue.
Remember, all drugs, even "safe" over-the-counter meds like antacids, can have side effects. It is a matter of deciding whether the benefit of treatment outweighs the risk.
Have you scheduled an eye exam?
-
Like -
Helpful -
Hug
3 ReactionsThank you so much for this info, Sue. I just started the three drugs and had had an eye exam July 3. My doc thought that was ok. I depend on having good color vision for my restoration job so it is very important to me.
-
Like -
Helpful -
Hug
1 ReactionHi I am Jane and I had to get off Ethambutal do to eye problems. I couldn't pass the vision view test 3 times. My eye doctor took me off it immediately. After 3 months off the medication I could pass it with no problems. Hope this helps. I continued with Rifampin and Azithromycin.
-
Like -
Helpful -
Hug
2 ReactionsThank you, Jane. I will get checked frequently.
Hi. I am Greg and have been taking the big 3 since March 2024, first at three times a week then daily since last September. About 2 weeks ago I started having vision problems in my left eye. It's like there is a constant glare in my vision. I went to an eye doctor who has been monitoring my vision but he couldn't find anything wrong but he referred me to another ophthalmologist specializing in toxicity. Was your eye problem like mine?
I believe my problem was different then yours. I didn't notice a vision problem until I couldn't pass the field vision test, which I failed 3 times. After being off Ethambutol for 3+ months I passed with no problem. I have heard that my problem is just one of a few different problems that Ethambutol causes. You might want to see an optometrist specialist or reach out to the major MAC hospitals. Your eyesight is so important, I hope you can find a good professional.
I am very much interested in this topic. I started the big 3 on Nov. 25, 2024. I had vision work up that included field of vision test on 12/2/24.
About 3 weeks ago I noticed bad glare trying to read or watch TV. I had a follow up appointment with optometrist on 1/15/2025 and was told everything looks good. No reduction in peripheral vision. He did not see a reason nor had any of his other patients had this problem. If any of you have experienced this would you please tell me what was the cause if any case was was found. Losing my vision was my biggest fear on these medications. I might add that the ID doc said he would be more concerned with rifampin on the liver..
Thanks for any help or insight any of you can give me.
Additional info: I was diagnosed with a biopsy of nodules and a bronchial wash.
Mycobacterium avium intracellulare (MAI)
I have dry cough, shortness of breath & heavy feeling in my lungs. Nodules found on CT. They are not cancerous. Was told I had a lot of mucus in my lungs.
I have never coughed anything up.
-
Like -
Helpful -
Hug
1 ReactionJust discovered optic nerve neuropathy in left eye from Ethambutol toxicity.
Having my hearing tested next. Stopping meds.
I have been on clarithromycin ER tabs 500 mg, One tab,and Ethambutol HCL 400 mg , 4 tabs, every Monday, Wednesday and Friday For almost one year.
No, I have not. Had a retinal eval 1 month after I started the meds. Will have another at 6 month and every 6 months as long as I am on the meds