Saturday, September 27, 2008 Angie asks

Q: Will I eventually go blind being on Plaquenil?

Does Plaquenil really make you go blind? I've been on it for two years now

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Answers (6)

Sara Nash, Health Guide

9/27/08 6:15pm

Hi Angie,

I've been on plaquenil for about a year, so not quite as long as you. When you began plaquenil, you should have gone through a round of tests with an opthalmalogist. When I went for mine, he told me that it was very unlikely plaquenil would cause any problems with my eye unless I were taking a much higher dosage than any doctor would prescribe.

As long as you are not noticing any difference in your vision, and going to see your opthalmalogist once or twice a year for check ups, you ought to be fine.

If you notice any difference in your vision, though, you should definitely bring that up with your rheumatologist and/or opthalmalogist right away.

Hope this helps,

Sara

AmyAria

10/ 2/08 11:27am

This is not a drug that I have taken, but I have done a fair amount of research on this and a bunch of others. From what I've read your odds on going blind are virtually zero PROVIDED you are diligent about getting your eyes tested as required. Blindness on this med isn't even close to being a given. Extremely rare and if it happens is usually because folks weren't following directions to test their eyes. This really shouldn't be an issue keeping you up at night.

rhinson

4/ 1/11 10:39pm

just came across your comments. my mother has not taken this drug in 30 years. she kept all her appts with optometrist every 3 months and at the first sign of damage to eyes she quit taking it. now after 30 years she is indeed blind and every optometrist and there has been many tell her it is from this drug.

Shane

12/20/12 2:31am

Amy, eye damage from Plaquenil is not "virtually zero." The makers of this drug are downplaying the dangers of loss of vision. Do a little more research and you'll find that even though people are following the recommended guidelines, they are still finding themselves with vision problems. This is not a drug to take lightly. I really wish I'd never taken it and kept all of my vision.

smurrill

12/ 8/08 3:46pm

Yeah, you chances are near zero, I have turned out to be a rare case. I take it for Lupus. I am on my third visit/screening from my eye doctor and it is starting to show up.

Plaquenil is a very toxic medication but one that serves great purpose for those of us that need it. Since I have been on it my memory has improved greatly, my joints do a bit better (still painful but not a daily thing like it was) and so forth.

My eye doctor has seen HUNDREDS upon HUNDREDs of people on this medication and in that time I am only the 6th person to have an issue with it. Just keep up with your appointments. Most of the eye issues are temporary initially with that cloudy feeling/vision. But that clears up.

What has occured with me is my focal point has actually been artifically inflammed and moved back so my path of vision is not true. If tht makes sense. It is only occuring in my right eye, which that eye has always been worse. There is more of a chance it is inflammed from the disease itself than it is from medication for most of us and even that is only about 10% in Lupus patients. The chance of it from the drug is some crazy number like 1 in 100,000 - which happens to be me.

Good luck, I am not blind but it may progress even off the drug, so be thankful, don't worry given the disease there are far worse thing s than the eye damage that can happen from the disease. SO take your medication and see your doctors regularly.

Clarity

1/16/10 11:53pm

According to what I have read any damage is not reversible. Therefore, going to an opthalmologist will not change your situation if you develop toxicity blindness, they can only confirm it. Since the toxin remains in the retina for up to 5 years going off of the medicine doesn't even necessarily stop the damage from continuing to some extent according to some sources. It seems to me unhelpful to hire someone to confirm that you are blind, unless you think that you will be happier blind and stuck in litigation for years trying to sue someone. I would have to be dying soon to give up my sight voluntarily and with a only a measured amount of time left, I might want to spend that time seeing my family.

LindyM

7/ 8/11 9:22am

I was on Plaquenil for at least 9 years, diligent in doing my Amsler Grid, visits to the eye doctor. I was taken off Plaquenil last week because the lining in my one eye is thinning. I have already lost some vision. Things that I was not told before by either my rheuemy or my opthalologist is weight is a factor as to the dosage and that the longer you are on it and the older you are, the higher the risk. I have to go back in 3 months to see how fast it is progressing. Researching I have found that even after all the plaquenil is out of your body, damage could and usually does occur.

Shane

12/20/12 2:26am

I've been on Plaquenil for over 10 years. I've been recently told to stop taking it because they found "blind spots" in my vision when I took the visual field (VF) test. What angers me is that you can follow doctor's orders all day long and still end up with loss of vision. I was never told size mattered or that the length of time you take it also matters. Yeah, my fault; I should've researched it more. But you trust the doctors and this is what happens. But it is true that even if you "catch it" early it's not reversible. Also, the damage will progress even if you stop taking it because it stays in your body for years. Yes, I said years. I feel we're all guinea pigs for these drug companies. I'm surprised there's no class-action lawsuit yet against the makers of Plaquenil.

Q: Will I eventually go blind being on Plaquenil?

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