Stopped Ethambutol due to blurry vision....options for other meds?

Posted by mch (Marycarol) @mch, Apr 3, 2023

I just started on the Big 3 the beginning of March. All was going well for about 3 wks. Then my vision became blurry. Went to my eye doc who did thorough exam of optic nerve which showed no issues, however she did concur the blurriness was real....appeared my prescription for distance had changed, but she described it as a minor change and too soon to say it was not just eye fatigue (my guess as I had not slept well for several days and was spending a lot of time staring at computer screen). But now it's been about 10 days since the eye exam and eyes still blurry. So I stopped the ethambutol 2 days ago. Haven't communicated with my Pulmonologist yet. Wondering if anyone has had experience with outcome if only taking Azithromycin and Rifampin? What alternatives to ethambutol have been prescribed and how are side effects?

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lweirdo1 | @lweirdo1 | May 26, 2023

I too was taken off that drug due to concerns with my eyes. Not sure what replaces that but I'm only taking one antibiotic now!

dlynn1210 | @dlynn1210 | May 27, 2023

Keeping in mind we are all different I have been on the Big 3 for three years. I had noticed a difference in my sight and a recent visit to my eye doctor confirmed I have 30/20 vision with my glasses than 20/20 but my biggest problem is I have noticed a huge loss in hearing which is attributed to Azithromycin. My pulmonologist recently asked me how I felt about going off all three to give my body a rest - I am all for it so have been off for almost two weeks. The biggest problem that I see looking back is we go into this knowing little to nothing. It is learn as you go.

Elle | @ellenholm | Jun 3, 2023

My husband's ophthalmologist became concerned about some changes to his vision field test. The infectious disease doctor, monitoring his MAC, was consulted and ordered Moxifloxacin as the replacement for ethambutol. Just happened yesterday, June 2.

The side effects from all these drugs taken for such a lengthy period are all pretty scary and all the monitoring required is nerve-wracking. After 5 months of this routine, I'm not sure the treatment is not worse than the diagnosis! His case was rather a toss-up. His symptoms are pretty mild. Anyone quit after a few months?! Of course, this is HIS decision and one to be made with his physicians.