I was on Plaquenil for a long time to treat lupus. A few comments. It worked great. When my rheumatologist retired two years ago, I switched doctors and learned that the dosage he had prescribed was at least double what it should have been given my size and weight. The result, despite every six month eye exams, was damage to my retinas. I had to quit plaquenil which resulted in lots of fatigue, stiffness etc. I'm now on Benlysta which isn’t perfect but helping a lot.

My suggestion: be a strong advocate about dosage and get your eyes checked by a specialist who knows about this drug every six months, not annually. Finally, both my current rheumatologist and retinal specialist have told me that the patient shouldn’t be on plaquenil for more than 8-10 years, at most. I was on it for 13 years, my current doctors were truly horrified, and my former doctor never said anything or offered alternatives.

As always, educate yourself and be your own best advocate.