I have been taking plaquenil for a little over 10 years and getting eye exams regularly. Suddenly I'm experiencing eye problems (blilnd spots). I have stopped taking plaquenil, but now I'm being told by doctors that the damage is not necessarily reversible especially if you have taken it for a long time. I'm hoping to find people who have recovered from the eye damage.
Has anyone experienced plaquenil toxicity with damage to eyes?
Question posted by barb2032 on 1 Aug 2009
Last updated on 24 October 2020 by Heidigirl4est11
Yes, I have an eye exam every year because since the age of 12, I have extremely poor vision (stigmatism both) and it has increasingly worsened over the years; to which I needed bifocals last year… This year at my exam, I was told I now have the retinal damage from the Plaquenil. That was in August and I had a recheck 2 months later, yesterday, for re-evaluation and to check the progression… She also gave me the eye chart to check at home in case there are really bad changes before then, then I would need to come immediately. I have only been on Plaquenil for about 2 1/2 years. I have severe, advanced rheumatoid as well as a couple other immunosuppression diseases causing damage to my entire body, severe joint damage in many areas even after surgeries, quick deterioration in the 2 1/2 years since I’ve been diagnosed.
I take about 15 meds daily, for many disorders including nerve/ spinal damage and I receive an IV infusion every month also for the past 2 1/2 years. The three baseline meds for my rheumatoid are Azulfidine, Plaquenil and Leflunomide, plus prednisone prn and water pills also prn. I have already been through 4 different IV immunotherapy‘s because they only work for a few months then I have breakthrough flares and more damage. The rheumatologist switches the IV meds but the oral meds never change. Rheumatologist said I need to be on them all the time.
So I will find out when I go back next week what’s going to happen.
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.
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 had been on plaque when L for a few years and then I noticed that my eyesight was having problems. I stopped it immediately and went and saw three different doctors and all three eye doctors said that I had retinal atrophy. So I went to the ophthalmologist which was my third opinion and have been continuing to see him for the past 3 1/2 years. I am going blind because of the retinal atrophy due to the plaquenil Normally after you stop plaquenil your eyes will stay at the damage level that was caused to it, but in rare cases the damage will continue. I, of course, and that rare person and I have continued to have damage happened and I’m now going blind. At the time that originally went into the ophthalmologist, he had said there was no surgery and no I medicine that would correct the damage that was already done. I just went in for a recent visit and he was emotional about the fact that the damage was continuing and that I was losing more eyesight.
He said that he wished there was a magic wand that would make It stop. Plaquenil should not be on the market when it causes damage like this because now I’m going blind. There should be a class-action lawsuit due to this medication. No one, absolutely no one should have to go blind because of this medicine.
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
I got a complete annual eye exam because I took plaquenil for RA for several years. A few years ago my eye doctor noticed an issue on the exam, and I noticed peripheral vision damage and glare issues. He immediately (same day) called my rheumatologist, who took me off plaquenil. My eye doc said it was the first case he had seen where there was an effect. My annual exams have shown that things have stabilized, (3 years now I think) but at the same time my peripherals have gotten somewhat worse and my readers are now at 2.50. My rheumatologist put me on Embrel immediately and that seemed to do the trick for RA, except in the last 6 months I have had two blood clots in my legs (one each) and tonight I did some research and found out Embrel can be related to blood clots in some cases. Tomorrow I'll call my rheumatologists and begin testing there. It really IS a series of battles with RA.
I have been taking plaquenil for 12 years... 400 mg daily for about half that time and then down to 200 mg. daily. I had field of vision tests yearly with no problems detected. Then about two years ago my eye doctor began ordering the test every 6 months because he was detecting a problem. The last 6 months my eye doctor has ordered four of the field of vision test. The last two were done two weeks apart. Yesterday, he told me that there is some damage to the retina in one of my eyes... that the last three tests have had the exact results. He told me that the plaquenil stays in your system... it is not metabolized by the liver. Therefore, the damage is irreversible. He also told me that the damage can continue even after you stop taking the plaquenil. Bad news.
I have taken plaquenil for many years (15-20). I have had vision disturbance that has gotten increasingly worse over the last few months. I have been going to my opthamologist every 6 months faithfully. He said he never heard of anything like my vision disturbances, (spinning rings, whirrling balls, flashing lights within a ring that I see.) . He thought it had something to do with some type of migraine which I did not think was correct. I just went to Winston-Salem to see a retinal specialist and am waiting for his reply--he did say it looked suspicious for toxicity. I just read an article by a lady who has experienced the same visual disturbances and was diagnosed with toxicity and has been off plaquenil 2 years but her eyes are still getting worse.
My Mother is legally blind from this medicine. I would advise to stop taking it. When the doctor first put my Mother on this years ago, one of the side effects is damage to your eyes, the makers of this drug said that if the drug was stopped there would be not futher damage. This is a lie. My Mother has gone to several Doctors and they have all said the same thing. It is from Plaquenil. There is nothing that can be done to reverse the damage, and all these years later my mothers eyesight is getting worse. She cannot drive, read and she has to sit so close to the TV just to see it.
- Plaquenil uses and safety info
- Plaquenil information for Healthcare Professionals (includes dosage details)
- Side effects of Plaquenil (detailed)
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