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A MyLupusTeam Member asked a question 💭
Santa Ynez, CA

Saw the ophthalmologist on Thursday. Had the usual battery of tests and expected all to be well. ChatGPT helped explain the results below, but the bottom line is that I've lost much of my central vision. It's rare, but it can happen. If I had waited and not had this yearly, I could conceivably have lost my vision. As it is, stopping cold turkey brought on a flare. I assumed some of the abilities I'd lost, such as parallel parking, were due to the onset of cataracts, but I was wrong (they're a… read more

June 10
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A MyLupusTeam Member

Thank you for sharing!! For me, my central vision is gone, but I maintain my peripheral vision. That is the strangest part of Lupus - it affects so many in very different ways. My mom and brother had/have RA, and their symptoms followed a traditional pattern. Not my Lupus anyway. I was in remission for years, but when I turned 70, that disappeared. Ah, well, I'm off to a brunch. Still have many things I can enjoy even if I can no longer parallel park:(
Susie

June 14
A MyLupusTeam Member

I have Plaquenil toxicity and dry macular degeneration and had cataract surgery in 2025/26. The level of damage I have from Plaquenil has affected my peripheral vision. AMD has distorted the vision in my left eye and I compensate with my right eye. I don't know my numbers but I will check. I am adding you to my team so that we can compare notes. Take care and have a peaceful night.

June 13
MyLupusTeam

What have others experienced with Plaquenil (hydroxychloroquine) toxicity, particularly regarding vision loss and stopping the medication?

First, it's really important to acknowledge how significant this is — catching this early through your yearly eye exams likely made a real difference. That was a smart and proactive Show Full Answer

What have others experienced with Plaquenil (hydroxychloroquine) toxicity, particularly regarding vision loss and stopping the medication?

First, it's really important to acknowledge how significant this is — catching this early through your yearly eye exams likely made a real difference. That was a smart and proactive decision on your part.

Plaquenil toxicity affecting vision, while rare, is a known risk. The factors that can increase that risk include:

- Taking more than 400mg daily
- Long-term use (5+ years)
- Reduced kidney function
- Being over 60
- Having a pre-existing retinal condition Other MyLupusTeam members have shared mixed experiences after stopping Plaquenil cold turkey. Some reported no significant withdrawal effects, while others described being unable to walk from joint pain after just four days off the medication.

Stopping Plaquenil suddenly is known to trigger lupus flares, which aligns with what you're experiencing. Research involving over 1,400 people with lupus found that those who reduced or stopped the medication were significantly more likely to flare compared to those who stayed on it.

Talking with your rheumatologist about alternative treatments to manage your lupus now that Plaquenil is no longer an option would be an important next step. You shouldn't have to navigate this alone. 💙

June 10

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