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?
- Asked
- 1 Aug 2009 by barb2032
- Updated
- 24 October 2020
- Topics
- plaquenil, rheumatoid arthritis
22 Answers
lillypads1972
7 Nov 2009
My mother was diagnosed with Plaquenil Toxicity in 2007 she first noticed changes in 2006, although being followed by her eye doctor they failed to notice this as Plaquenil TX until it was to late. After the medicine was Discontinued she continued to have more and more visual changes for the worse and still is declining in her vision. She is now legally blind. There is noting that can be done to restore the vision, although we are told that if it had been detected before the full blown stage, Bulls Eye then it may have restored it's self in time. I do know that the is something called eccentric viewing. I technique that helps to teach the muscles of the eye to view differently that can help with the vision if it is minimal. But it is painful and there are very few OD that know how to do it. I would love to hear more about your case, as we are in the middle of a law suit with the eye Doctor that was suppose to be monitoring her for the condition and failed to diagnose.
The good part is that they have discontinued the medication for you... but you may still have continued visual loss. Be sure to continue to be checked.
barb2032
8 Nov 2009
I'm so sorry to hear about your mother's continuing problems. I've experienced some real frustration also as I don't think they diagnosed mine as quickly as they should have if there had been more extensive testing than the color blindness book. Since seeing a retina specialist and having the diagnosis made in May, I'm about the same. I THINK there is some of the bulls-eye syndrome you mention although the doctor has not said those words to me yet. Initially the first reaction was kind of like it's irreversible at this stage and then at my second appt., it was well it might reverse itself but it will take a very long time. I don't think I've gotten any worse although it seems to vary somewhat from day to day. My left eye is definitely worse than my right, so I keep hoping I will at least get no worse than I am now.
Did your mother's eyesight continue to deteriorate rapidly? Have they given her any words of hope? It's so frustrating because it seems like it is an unnecessary condition. I have not gone back to my original doctor, but I still believe I will talk to him and tell him that I think if he has other patients they need to be paying a little more attention. This may be a rare condition, but it is very frightening if you are one of the rare ones that get it. I would be interested in any more information you may find. I'm going to look up the eccentric viewing technique, but since I live in a sparsely populated area, I probably would not be able to find anyone around here.
delag
3 Feb 2010
Hi this is my first post. I am on Plaquenil and have been only for 3-4 years now. I have noticed that my eyesight is getting worse. I went to my eye doctor 6 months ago and I was using cheater glasses at 150 strength and I complained about them not seeming strong enough which they weren't they should have been 200 strength. I got my glasses from him then broke them so I am back to cheaters but in 6 months I am now using 250 strength and can read, walk and even drive with them on so clearly they still are not strong enough. A friend told me that the Plaquenil can cause problems with your eyes which is why I checked this board today. I have an appointment with my Rhuematolgist who put me on this medicine at the end of the month and I believe the dose is going to be increased should I tell him about my eye sight loss or call my eye doctor?
tinaberry
12 May 2010
i would definatly tell your doctor about any eye problems you have, once you have macula degeneration your eyes will deteriorate really fast and there is no stopping it. my visits were 6 monthly and i thought that was enough, but i was wrong, there was no sign of any problems 6 months ago, but when i went in for my next appointment i was horrified to find out that there was a problem and that it was extremely serious. i now have to see an eye specialist to find out how bad it is and what [if anything] can be done. if you notice any changes to your sight at all get it checked out immediately.
becky1944
24 Oct 2012
Call your eye doctor, immediately. Don't wait.
Madisonking2018
28 Feb 2018
Hello, I have been taking Plaquenil for 29 years since 1989 I was told one should only take it for 5 to 10 years but no longer. I noticed my eyes were giving me problems since 2005. I went to the same eye doctor every year since I was diagnosed with Discord Systemic Lupus Erythematosus in 1989. She just referred me to a clinic with high tech equipment 1 year ago that could see in the back of my eyes. I just found out I'm only operating now on 50% of my vision before going blind the damage is done. I am so angry with them because somebody dropped the ball and I have to pay the price. They also said it may be reversible but their not sure, I said what "So this mean I have been taking this drug 19 years to long?" I want to know who was on watch I guess nobody, I am so disappointed in my doctors. Words can"t express how I feel and I can understand somewhat of how your mother feels. I not sure how to handle this because where I live this hospital suppose to be one of the best in the nation.
Emma Mora
22 Apr 2018
My RA doctor wants to prescribe Plaquenil but based on retina toxicity side effects, I’m having second thoughts. My main objective is to control by reumatoid arthritis without jeopardizing my health, least of all, my vision. So, I intend to tell my RA doctor to prescribe another medication with minimal side effects, if possible.Please advice. Thanks for sharing.
tanner01
2 Apr 2010
i had been taking plaquenil for 19 years. my eyes began to hurt and i lost some vision in my left eye. i have been off of it for 8 weeks and my eyes are much better but my feet and hands are getting more deformed. i'm thinking about reducing my dosage to 1/2 a day and see if i can tolerate that dosage. julia
charlyecc
3 Apr 2010
i have some damage myself, they said from the methotrexate, who knows. it depends on what kind of damage as to if it will get better or not. with the blind spots you might want to see a retina expert just to be safe. unless it is something like it should just heal up fine. good luck
tinaberry
12 May 2010
i have only been taking plaquenil for 18 mths and recently found out that i have macula degeneration, my last eye exam was only 6 mths ago and there was no sign of anything then. i strongly advise 6 monthly eye exams and if there is the slightest blurring of vision get it checked out.
jazzyelm
27 Dec 2011
I have been taking plaquenil for 2 1/2 months, and i have noticed blurring in my vision, alson headaches and very sleepy at times
rkroeger2
28 Nov 2017
Auto-immune disease also causes headaches, tiredness, and blurry vision. I was diagnosed with MCTD 2 years ago & my rheumatologist prescribed plaquinil aka hydroxychloriquine sulfate and haven't taken one yet. I have all these symptoms and many more. I haven't taken my meds yet & im looking for more holistic approach. Dietary changes help me tremendously but take discipline. I still have pain/progression but very slow. Also, no flare-ups so far with dietary changes. Subtle exercise helps with stiffness/pain. Balance is key & no extremes. Hugging everyone on this chain. It's a tough road we're on. My 55 year old husband also has ALS aka Lou Gherigs & daughter 17 has fibromyalgia. Dietary changes help us all & supplements but it still sucketh!
Susanli
9 Dec 2017
I have RA and have rec ntly been taken off methotrexate due to liver disease. I’ve been on plaquenil for over 10 years with no eye trouble caused by this med, just extra sensitivity to sunlight. I’d be interested in the type of diet that has helped you. Best wishes to you and your family.
Butterfly65
4 Feb 2018
Plaquenil causes narrow angle glaucoma. There’s a procedure they can do with a laser. They go straight in with a laser and make a few tiny holes in you eye. It relieves the pressure and helps some. My sister had it done. I take plaquenil not just for my joint pain. I get inflammation in multiple organs including my brain. I had Papilledema real bad they thought I had a brain tumor. It made me have double vision correctable with glasses, prisms. But my vision keeps getting worse. That time they checked the pressure with a spinal. Then they drained several tubes of CSF and a lot of my horrible symptoms went away. Well improved. I could walk without stumbling, swallow, stopped slurring and remembered words I would try to use. I think eventually I will lose my vision, but the rest of me will be better. That’s what my Lupus does to me. And I’ve been putting off my eye exams for over a year. I don’t want to go to Methotrexate . I don’t know why...
kaloeding
12 May 2010
I have only been on this med for about 2 months but am very interested in this question because I was given conflicting info on the subject, My rheumatologist told me any damage would be reversable when the med was stopped,the eye doc said it wasn't, the rheumatologist said I needed a baseline field of vison test-eye doc said it wasn't needed. The eye doc said I would have a better chance of vision problems because of the prednisone I'm on-no one said anything about problems from methotrexate-which I am on also. The best advice is always tell all docs involed EVERYTHING whether it seems important or not-no doc can help if they don't have all the pieces of the puzzle. I hope things get better-kal
libyS
30 Apr 2012
GET OFF Plaquenil now!! It has helped my RA but is destroying my eyes.
tricia3355
13 Nov 2016
I have been on Plaquenil for only three months, and experienced vitreous detachment from the retina. I didn't know what it was, but this was the Opthamologist's diagnosis. He immediately asked if I had been on Plaquenil, and of course, yes, just 3 months. He said the damage done will not ever go away. I have spots now in my left field of vision that float, and also occasionally flashes of light, particularly at night. I have stopped taking Plaquenil, but do have increased pain in my hands and feet due to RA.
Dianet711
10 Aug 2010
I have been taking Plaquenil 400 mg a day. I just returned from having my eyes checked and I have some macular degeneration in the left eye. it's just the start of it but I am very upset. My Rheumatologist hasn't been notified yet. I am worried, I don't know if I should continue to take it. My general prescription strength increased 2 levels in a year. I am scared. I wish I never took the drug.
Estella2
9 Sep 2010
I have been taking plaquenil 12 years- a 9 year period and presently back on for 3 years. It is my understanding that it affects peripheral vision only.
That is why they give a "visual field test" each time you go to the opthomologist. I always go twice a year for this examination.
suestuben
18 Oct 2010
I think an overlooked problem with toxicity is the knowledge of the opthmalagist. My first one did very little testing but 'bitched' about having to see me every 6 months. After 3 years, I tried a different one who gave me a battery of tests and was very surprised to find out that it was the first time I'd had the tests, especially the visual field test. So I've seen him for over 3 years and last month he was puzzled by the results and couldn't decide if they meant anything or not. He actually was encouraged by his assistant that there was enough change in results that I should see a specialist.
I was booked for the next week and the specialist just glanced at the results and said I am absolutely toxic with retinal damage to both eyes, especially the left one. He took the visual field test results and showed them to me, explaining that by the time they are this bad, it was absolute toxicity. He went into detail, educating me on how to read a v. f. test. At this point I can read the test better than my last 2 opthamalagists.
I am quite angry that 2 doctors lacked the proper knowledge to stop my eye damage before my left eye vision began to dim. What good are these doctors if they do not know proper procedure or how to read test results? I try to use the internet to keep my knowledge of my disease up to date, but I think it may also be good to see different doctors to compare their results, thereby (hopefully) finding the best doc for one's needs.
Redhead62
17 Dec 2010
I started taking Plaquenil 2/2009 by 8/2009 I was noticing changes in my vision. Thing were going dim but the eye doctor kept telling me there was no toxicity. By 2/2010 things were so dim I could not see to shop in stores. I quit taking Plaquenil but the DR still said no toxicity. My eyes continued to get worst. In tears I went back in July he finally sent me to a retina specialist. You don't have to have Bulls eye damage to have toxicity
Over weight women over 60 should beware of taking Plaquenil. I no longer drive at night and probably should not drive during the day. My color vision is affected. Everything is dark inside and outside is so bright the it is painful to open my eyes. Plaquenil toxicity is not reversible in most cases and continues to progress even after you stop taking it for several month and sometimes years because of the half life of Plaquenil One should see a retina special before taking Plaquenil in my opinion
sknelson13
10 Nov 2011
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.
libyS
30 Apr 2012
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.
kdpark
7 Feb 2013
My mother also experienced spinning rings, balls, wreathes, etc... Mostly circular shapes in varying colors and patterns. After seeing MANY professionals including a neurologist, a retinal specialist, neuro-ophthalmologist, and undergoing MANY different tests, she was diagnosed with Plaquenil toxicity. She does have field of vision loss, mostly on things that are close up. She took Plaquenil for almost five years before having any symptoms. By the time they figured out what it was (what they "think" it was) and took her off the medicine, the damage had been done. Her RA doctor insisted on eye exams twice a year but still does not blame this drug for her vision loss.
Shane1971
3 Jun 2017
@kdPark--- The reason your doctor is refusing to say it's Plaquenil toxicity is because he probably fears you may sue him. From what you described, it unfortunately sounds like it is.
becky1944
24 Oct 2012
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.
upstatephil
12 Aug 2016
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.
cjfore
19 Mar 2017
I was on the med for less than 2 years and I have vision loss. I go Monday to a Retina specialist and it sounds like the same problem that everyone has had but what really surprised me is my RA doctor also said its reversible and the eye doctor said it looks like toxicity Retina and it's not. I feel its the drug company that we need to complain to.
Shane1971
3 Jun 2017
Took Plaquenil for 13 years for lupus. Saw eye doctor every 6 months as required. He never caught vision loss until it was too late and then tried to say it was my fault for missing one appointment. Lupus doctor wanted to blame eye doctor even though the dose he gave me over the years was way too high for my size. There was plenty of fault to go around but in the end they get to go on with their lives as if nothing happened and I'm left partially blind. I'd also like to add that the drug companies keep saying this toxicity is rare and yet, I keep hearing about all these people who've experienced vision loss. I'm thinking there needs to be a class action lawsuit soon before more people are left disabled by this drug.
Heymiller
29 Nov 2017
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
tkmmmmlr7
8 Dec 2017
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.
cjfore
9 Dec 2017
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.
Val454
9 Dec 2017
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.
Further Information
- Plaquenil Information for Consumers
- Plaquenil Information for Healthcare Professionals (includes dosage details)
- Side Effects of Plaquenil (detailed)
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