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?
@grgpc
Greg what did the opthomologist tell you was causing the eye glare? Was it toxicity of the ethambutol?
I have had a glare for the past 4 months. Optometrist doesn’t see any reason for it. Field vision test is ok.
@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?
@sueinmn This is very reassuring, as I am about to see an opthalmologist tomorrow for a pre-treatment visit. It is terrifying to consider the side effects as I too use my eyes intensively for my legal work—and my voice and ears, etc.
I took Ethambutol along with Rifampin and Clofazimine for 15 months and my eyes are still OK. My ophthalmologist suggested I get a Snell vision eye chart from Amazon and check my vision at home on a regular basis.
I stopped talking Ethambutol after 10 months, negative for for optic neuropathy,, just dry eyes, my vision is improving , the blurriness is gone, continue with my eye drops, hopefully I don’t get MAC again.
@grgpc
Greg what did the opthomologist tell you was causing the eye glare? Was it toxicity of the ethambutol?
I have had a glare for the past 4 months. Optometrist doesn’t see any reason for it. Field vision test is ok.
@arkie01 Hi, yes the doctor described it as optic nerve damage due to the Ethambutol. I stopped taking the Ethambutol and saw a total of three ophthalmologists. After about 4 months my vision in my left eye started to get better. By August my vision was back to normal. The doctor said I was lucky since I'm 66 years old. My ID doctor did not replace that antibiotic with something else. He just kept me on the azithromycin, rifampin and arikace.
@arkie01 Hi, yes the doctor described it as optic nerve damage due to the Ethambutol. I stopped taking the Ethambutol and saw a total of three ophthalmologists. After about 4 months my vision in my left eye started to get better. By August my vision was back to normal. The doctor said I was lucky since I'm 66 years old. My ID doctor did not replace that antibiotic with something else. He just kept me on the azithromycin, rifampin and arikace.
I am getting a second eye check up today and a little concerned. I have noticed some changes. Is anyone dealing with painful joints and back pain while taking the big 3? Some days are pretty rough.
T-
I am legally blind and have peripheral neuropathy, numbness in feet and legs, caused by ethambutol. Both vision and numbness got worse after I discontinued ethambutol. In my case, vision changes were very subtle and hard for me to detect. See an ophthalmologist immediately. Ask your doctor if you can discontinue ethambutol if there is any delay in seeing the ophthalmologist. Warning. Not all ophthalmologists are good at detecting EON, ethambutol induced optic neuropathy. The first one I saw misdiagnosed my vision issues. I actually took myself off ethambutol, but it was too late.
@sueinmn This is very reassuring, as I am about to see an opthalmologist tomorrow for a pre-treatment visit. It is terrifying to consider the side effects as I too use my eyes intensively for my legal work—and my voice and ears, etc.
@paxmundi
Hello, can you help me find a top pulmonologist in Los Angeles or anywhere in California? Particularly one specializing in bronchiectasis and MAC ?
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@grgpc
Greg what did the opthomologist tell you was causing the eye glare? Was it toxicity of the ethambutol?
I have had a glare for the past 4 months. Optometrist doesn’t see any reason for it. Field vision test is ok.
@sueinmn This is very reassuring, as I am about to see an opthalmologist tomorrow for a pre-treatment visit. It is terrifying to consider the side effects as I too use my eyes intensively for my legal work—and my voice and ears, etc.
I took Ethambutol along with Rifampin and Clofazimine for 15 months and my eyes are still OK. My ophthalmologist suggested I get a Snell vision eye chart from Amazon and check my vision at home on a regular basis.
I stopped talking Ethambutol after 10 months, negative for for optic neuropathy,, just dry eyes, my vision is improving , the blurriness is gone, continue with my eye drops, hopefully I don’t get MAC again.
@arkie01 Hi, yes the doctor described it as optic nerve damage due to the Ethambutol. I stopped taking the Ethambutol and saw a total of three ophthalmologists. After about 4 months my vision in my left eye started to get better. By August my vision was back to normal. The doctor said I was lucky since I'm 66 years old. My ID doctor did not replace that antibiotic with something else. He just kept me on the azithromycin, rifampin and arikace.
@grgpc thank you very much for info and for taking the time to answer. I very much appreciate the help.
I am getting a second eye check up today and a little concerned. I have noticed some changes. Is anyone dealing with painful joints and back pain while taking the big 3? Some days are pretty rough.
T-
I am legally blind and have peripheral neuropathy, numbness in feet and legs, caused by ethambutol. Both vision and numbness got worse after I discontinued ethambutol. In my case, vision changes were very subtle and hard for me to detect. See an ophthalmologist immediately. Ask your doctor if you can discontinue ethambutol if there is any delay in seeing the ophthalmologist. Warning. Not all ophthalmologists are good at detecting EON, ethambutol induced optic neuropathy. The first one I saw misdiagnosed my vision issues. I actually took myself off ethambutol, but it was too late.
@paxmundi
Hello, can you help me find a top pulmonologist in Los Angeles or anywhere in California? Particularly one specializing in bronchiectasis and MAC ?
Thanks for any help you can give me.
GinaY
I guess you didn’t see my comment. Barbara was mistaken. I know no one in LA. So sorry!