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Ethambutol
I know there has been some threads about Ethambutol. I have been on 1200 mg 3xs a week along with Azithromycin and Rifabutin for the last year and a half.
However, after seeing an eye specialist he got me alittle worried about the toxicity of Ethambutol. I have now been off it 2 weeks now and have to make a decision about whether to go back on it or not. My lungs or my eyes? I feel like I may have to sacrifice one over the other. I am being referred to National Jewish because my last bronchoscopy showed I was refractory(mac still there).
My ID said I could maybe go on clofazamine(?) instead.
Sorry for long winded but has anyone had color blindness or worse with Ethambutol and has anyone been on the Clofazamine(it was a leprosy drug and I think you can only get it at Natl Jewish), Thank you!
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@cpitts Were you having vision issues, or was this a routine visit? My docs made sure I knew exactly the symptoms to watch for, to stop ethambutol immediately if noticed, and I had my eyes screened every 3 months while on the meds (incl 6 Mos every day). I'm still fine over 6 years later. There are other docs who prescribe alternative meds, but an ID doc should determine whether your strain of MAC is sensitive to one of them.
PS, my ophthalmologist was the doc of choice to see MAC patients in out clinic system.
I would ask my doc to explain why they felt you were at extraordinary risk and should not use ethambutol- like seeing changes.
I have been on Ethambutol daily for 2 years and have regular visits to my eye doctor but so far I've had not issues. I am also on Clofazimine which has to go through a special program (SPIND) because as you said it is a leprosy drug and not yet FDA approved for MAC. It is shipped to my house, 3 mos supply at a time, directly from the Dept of Health and there is no charge for it. It's hard to make these decisions, I certainly understand the fear of adverse effects. I did not catch this disease until it caused multiple cavities and damage to my lungs so my perspective is to do all I can to try to rid myself of this awful bacteria or at least keep it knocked down to prevent further damage. Being referred to NJH is great from all I have read. You will have doctors that are very familiar with MAC and the meds. I wish you the best. Prayers for your continued strength and a healthier tomorrow.
My infectious disease doctor advised me to keep with regular eye checkups as the medication could effect the eyes. Fortunately it did not effect mine. My vision has gotten worse over the years and I've had cataract surgery, but no issues from the medications.