medications and eyesight.

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.

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.

@thisnthat P.S in March my retina was ok ,

@thisnthat I cant take methotrexate because of liver issues nor leflunomide, now I wonder about plaquenil, wonder if there is anything else instead.

@tisme
I’ve been avoiding methotrexate, and have had bad reactions to some of the other meds. Right now, all I am taking is LDN….hoping the long-term use if HCQ has put me in remission. 🤞

@tisme
Vision changes are very common as we age, and it takes a very experienced clinician to determine if the changes are due to age alone or attributable to medication side effects. In my own case, my opthalmologist is erring on the side of caution, and having me return in about 8 weeks to reassess.

@thisnthat its happened this last 6 months ( since the rheumy upped the dose ). but its a case of which came first the chicken or the egg??!!