Eye Exams while taking the Big 3

Posted by shirleyrr0 @shirleyrr0, Dec 24, 2025

I have MAC and have been taking the Big 3 for 2 months with no side effects. My ID told me to go to my eye doctor to start a base line for side effects with the medications which I have done. I have visited my eye doctor twice and the last time I was there he told me to come back in 6 months. When I told my ID what he said he was surprised. He said I should be seen every 2 months, but if that was what me and my eye doctor decided it was up to us. Have other people experience the same or should I go back to my eye doctor in 2 months?

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@shirleyrr0 After the initial baseline and 3 month exam, my eye doctor told me what symptoms to watch for. If these happened I was to stop ethambutol and call immediately, otherwise see her every 6 months. I managed almost 2 years on the meds without eye issues.

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Profile picture for Sue, Volunteer Mentor @sueinmn

@shirleyrr0 After the initial baseline and 3 month exam, my eye doctor told me what symptoms to watch for. If these happened I was to stop ethambutol and call immediately, otherwise see her every 6 months. I managed almost 2 years on the meds without eye issues.

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@sueinmn
Sue: Thank you for your comment. May I ask what symptoms did your eye doctor tell you to look for?

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Dimming vision, watery lines, "dropouts" - blank spots, either in central or peripheral vision, worsening near or distance vision, newly blurry vision..

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Profile picture for Sue, Volunteer Mentor @sueinmn

Dimming vision, watery lines, "dropouts" - blank spots, either in central or peripheral vision, worsening near or distance vision, newly blurry vision..

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@sueinmn
Thank you.

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I only went to my ophthalmologist once during the year that I was on the Big Three although I also went to an optometrist at 6 months because I thought I should be seen more often. I was told by my respirologist to self test for colour blindness which I did. At my recent visit to a different opthamologist (mine is on maternity leave), he said that I had a shaggy right optic nerve and he blamed it on the ethambutol. Luckily, my vision has not been impacted. If you can see your ophthalmologist more often, I think that would be a good idea.

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After the vision test ordered by my ID doctor prior to starting the big 3, my ophthalmologist said "See you in a year." He told me to watch for color changes or double vision.
I'm going on 4 months on the big 3 without any side effects.
I may pay him a visit sooner just to be sure.
Christine

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I was checked every 3 months & advised to check for color blindness in between using tests online. That resulted in one emergency visit because 3 different online tests had wildly different results. I was fine & after that I relied on the 3-month checkups and no self-checks.

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Thank you for responding.

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Profile picture for westcottkm3040 @westcottkm3040

My doc says every 3 months.

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@westcottkm3040
Thank you for responding.

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