This is such a timely post. I have been on HCQ about eight years at a dose shy of 300 mg/day. My ophthalmologist has seen me twice a year to check for retinal toxicity. Considering my conservative dose, I thought that a bit much. Surprise! At my recent eye appointment he found suspicious changes in my retina consistent with plaquenil toxicity! It had been my impression that this was a very rare side effect of plaquenil use, but not according to my doctor. When I asked how many of his patients had developed this, his reply? “A bunch!”

I am now off HCQ, and would caution anyone on this medication to make that visit to the opthalmologist not once, but TWICE a year. You are more apt to prevent major retinal damage if caught early enough. And there is some hope for partial reversal.