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Stopped Ethambutol due to blurry vision....options for other meds?
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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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!
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.
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.
I’m so tired of all this junk, as I’m sure you are too. I’ve had MAC and Bronchiectasis for the past 4 years. Tried all 3 meds and ended up in the hospital with severe abdominal pain. So, long story short, I was give ethambutol, along with azithromycin and an inhaled antibiotic. I have now concluded that by adding the ethambutol I now have no appetite, or desire to eat. Yesterday I ended up in the hospital again. My numbers are all fine but I’m now convinced that I will drop the ethambutol as of tmrw and stick with the other two as I was doing. The ONLY reason my Dr. had added it in the first place was because he thought it “might help” since I was not taking the Rifampin(??) instead but that’s the one that has made me so ill anyway. Now my eyesight is all weird,,,,,the point is, these drugs rarely work, the patients are the trial and error and I can no longer care as my MAC keeps slowly spreading anyway. For those of you that are blessed enough for this to be working, I couldn’t be more thrilled for you, really! But I can’t live like this anymore. Oh, and I don’t qualify for the “minimally invasive lung procedure.” Talk about a gut punch when the surgeon told me……all the best to all of you with this wretched disease. My heart goes out to you too!
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