Concerns about long-term use of hydroxychloroquine

I have been on Plaquenil for a few years now and see a retina specialist annually for my screening. He has told me multiple times that, in his practice, he’s seen retina damage from hydroxychloroquine about 5 times in over 30 years and working with hundreds of patients. It is possible, but not likely.

I’ve been on 400 mg daily for about 12 years now. I’ve had two eye doctors tell me they’d like to see me get off of it to preserve my retinas since I’ve been on it so long but I have had no problems on my biannual testing thus far. My rheumatologist disagrees and thinks as long as my eye screenings remain normal this likely will be something I am on for life. This was the first Sjogrens med I was prescribed when diagnosed and I honestly don’t remember if I could say it helped back then. Now, it’s just part of my regimen. I don’t have any side effects from it so no reason to stop from my rheumie’s point of view. From my understanding, it’s purpose is to preserve our organs from damage caused by Sjogrens, it really shouldn’t cause any (the biggest concern with this med is the retinas, but if seen regularly by an ophthalmologist and with regular testing, rarely is this an issue).

I have SLE and Sjogren’s and take 400mg a day. My dry eyes are an ongoing problem. My biggest benefit from Plaquenil is that my sedimentation rate, hair loss, and ANA levels have stabilized for four years now, but I still have most of my symptoms.