Has anyone experienced plaquenil toxicity with damage to eyes?

I had been taking plaquenil for 22 years. I was told I have toxic maculopathy from the plaquenil. Therefore; I was told to stop taking it immediately. I went to my exam every year but for whatever reason, my old ophthalmologist wouldn't do a visual field. So I went to a new ophthalmologist and she tells me that I have toxic maculopathy and it is not reversible. I was shocked because the other ophthalmologist never said anything about having toxic maculopathy. For all I know, I could of had it for years and the doctor never said anything. I was glad I changed doctors. She referred me to another doctor and he said he is seeing extensive changes to my retina which could lead to blindness.

I have been taking hydroxychloroquine since 1998. All my eye exams are clear of retinal damage. I Ave heard that chloroquine is more likely to cause eye damage. In 2001 I discontinued Plaquenil for a year and ended up hospitalized with a nasty flare. I immediately resumed taking Plaquenil. It is worth the risk for me. I was told the dose is weight related so I have changed dosage if my weight fluctuates, to the lowest possible dose.

Yes, I have had what I call a “doughnut” shaped blurry vision. Just last night, I saw the bull’s-eye for the first time. So it gets worse… I took plaquenil at the max dose for 11 yr. (1999-2011). I had biannual exams at an ophthalmologist. I got the definite DX at UTSWMC Dallas. I stopped driving ~ 5 yr ago. Dry eyes makes my vision worse. Flexeril has dry eyes as side effect. My new eye doctor prescribed Restasis, but it was $800/mo. I’m going to start Klarify, which should increase my tear production. (I also have Sjögren’s syndrome = dry eyes). I am adjusting the picture on my TV to reduce the brightness. :^)

On December 3,2021 I was diagnosed with drug induced Retinal Toxicity. For 12+ years I was taking Hydroxychloroquine for Systemic Lupus Erythematosus. In November 2021 I went for my annual eye exam and due to the medication use I was referred to a retina specialist to perform screenings her office could not perform. In the 12+ years of taking this medication and getting annual eye exams, I was never offered or given the specific screening(s) to detect the retinal toxicity. I was shocked when the retina specialist stated that I had retinal toxicity and the damage done to my vision is not reversible and may continue, there is no therapy. I had to immediately stop taking the hydroxychloroquine however the drug takes a long time to clear your system but can continue to cause vision damage. The retina specialist stated that the severity of the damage has been happening over time. Due to the length of time on the medication and the risk of vision damage, screenings should have been done in accordance with AAO guidelines pertaining to Hydroxychloroquine usage.

I have issues with my eyes since I took this drug. I was only on it for 6 months. I had a retina exam prior to taking it and 6 months later during a routine eye exam, the optometrists was shocked. He suggested I see an ophthalmologist. I went to see him and was referred to a retina specialist. There is nothing they can do. I will lose my central vision but keep my peripheral vision. I would love to sue the company but they will not come out and say it is Plaquenil toxicity. If anyone has been successful, please let me know.
Thank you.
Jackie

Yes! I went to the doctor today. He told me it was irreversible. I want to know if I can do something to the drug company!

I was diagnosed with eye toxiety approximately 1.5 yrs. ago, I took plaquenil for 20 yrs. for rheumatoid arthritis. The Opthamologist & retinal doctor had me stop immediately. They said I may see a improvement, but it takes approx. 1 yr. to completely get out of your body. I have been medication free since than, and dealing with discomfort. Fortunately my RA is now in remission with no signs of inflammation. I have seen a slight improvement, but I still suffer from the bulls eye when my eyes are closed. Plus my night vision has so much flashing lights and a spider web sight to see through I can barely see whatever I am looking at. My eyesight is poor to start with, and in the last year I have had to replace my prescription. My hope is that change does not continue.

i have lupus sle i just found about 3 weeks ago that i have cysts on my retina.i contacted a lawyer this week to see what can be done. hes hopeful i do have a case

My wife was started taking plaquenil at 18, she is now 50. She has severe retinal damage from this drug. She is now a disabled physician. She no longer drives and can't see peoples faces unless she looks at them from the side. My wife has lupus. This drug was her miracle drug when it came to lupus. She can no longer take it because of the damage it has done to her vision. The damage can't be reversed. We are now fighting with Cigna for her private disability. They think she can practice medicine with this type of vision loss. She can't even see the thread for stitches. If you are taking this drug stop immediately.

Yes, I was prescribed Plaquenil, and within three months woke up to a spiderweb appearance in my left eye. I immediately went to my Opthalmologist who asked if I was taking Plaquenil. The spider web subsided after a few weeks, but I still have floaters. I stopped taking Plaquenil immediately. He said there was no reversing the damage.

I took it in 2012 for 6 mths. My doctor NEVER told me to get eyes checked, that it was a very good drug for lupus. I lost part of my eyesight in one eye. I've read other people haven't taken it for yrs and lost eyesight in one eye. Eye specialist said UCLA is trying to find something to reverse this but it would be 5 to 10 yrs. Others haven't taken it for yrs and lost eyesight 7 to 10 yrs after they stopped it.

Yes I have rentina toxicity and only took Plaquenil for a little over a year. I have bullseye vision and night vision problems too. There is nothing that can be done to fix the damage. I was getting regular check ups also. I was told it was reversible if I had eye problems after you stopped taking it. That is not true ! So sad I now have damage for the rest of my life.

I'm sorry to hear this happened to you too . I quit taking plaquneil 10yrs ago the day I was diagnosed with irreversible bulls eye retinopathy!
I was seeing my ophthalmologist every six months and like you , all of a sudden one day it was there . Now I see my retina specialist every six months
Take care