Eyes, plaquenil, and thanks

The vision problems Plaquenil can cause are extremely rare, can be reversed if you catch it fast enough, and take many years to develop. Easiest way to deal with it is an eye exam every 6 months where they dilate your eyes and one a year where they do a visual fields exam. So long as you get checked they can catch any problems early on and have you stop the plaquenil at a point where it is entirely reversable. As I said the problems are rare and the warnings are left over from when they used much much higher dosages. Every eye doctor I have seen has said they never see the problems warned about and I go to eye doctors who deal with lupus patients regularly just to be safe.

What if my visual field is already significantly compromised? At what point does this test indicate to stop the plaquenil, or can it under the circumstances? (I know, I know, I will ask the doc... but I'd like to hear your experiences/ opinions.)

It's a good idea to have a base line test by an ophthalmologist especially if there are existing sight problems. Perhaps Plaquenil will already be contraindicated in your case. If so, there is an alternative antimalarial called Quinacrine which does not affect the eyes. It has to be obtained from a compounding pharmacy.

If you have the regular eye tests while taking Plaquenil any damage should be detected before the sight has actually been damaged and is reversible. There are a very few people who have had eye damage and millions have taken this very beneficial drug without any problems and quite a few like myself for many many years.
The risk is somewhat greater in overweight people and in more than the regular recommended maximum dose which is about 3mgs per lb of ideal body weight.
If you have kidney involvement you will need more than Plaquenil. Urine tests are essential to show abnormally high protein loss. Taking Plaquenil might help stop disease progressing and needing more toxic medicines.

BB

I work in the eye field and alot of it has been with children, even though she is six they can still do very good exams on her, just dont take her to an optometrist make sure it is a pediatric ophthamologist they are much better at dealing with young ones! They may attempt a visual fields depending on her attention span, they will also need to check her color plates, even if she cannot say what the #'s are she can atleast try to trace them or that is how i do the exams.   I have asked the doc's that I work for if plaquenil has caused any eye problems that they know of and they have all at this point said not that they have seen.   MAENAD: do you have problems with your vision already? Glaucoma?

Yes, the reason I don't want to try the plaquenil is because I already have eye problems. I have scarring and a cyst in the right retina, so that eye is pretty much toast already. I have floaters and retina problems in the left eye too, but I still see well enough in that eye to work (I'm a writer, editor, and publication manager who is dependent on my eyesight) and to drive during the daytime.

From what I've read, these are exactly the kinds of eye problems that can be aggravated by plaquenil. I understand it's rare, but I'd be a perfect candidate for becoming one of those rare cases.

My next bajillion gallons of blood and some urine will be going into tests for kidney involvement. If there's trouble in that region, I'll think about risking my ability to work and drive.

My doc says the same thing others do, apparently: That it's rare and there's really not much to worry about. What I think is that he has a only a few specialized hammers in his tool box, which makes me look exactly like a nail. I think I'm a potential and future nail, but at this point in time: not a nail.

 

I hope I'm not too late with my advise. I just came across your posting today. I have been taking plaquenil for several years for Rheumatoid Arthritis (200 mg 2xday). Yesterday my eye doctor immediately took me off of it because I have developed eye problems. I have been getting my check-up every 6 months since beginning my meds and was fine until I recently lost 45 lb. This brought my weight down to still well above the so-called safe area of above 135 lbs. for my dosage so I, in theory, should not have any problems. But my visual field shows differently, and also the blurry patch in the middle of the page (where my field of vision is messed up). I also flunked my color test (shouldn't have - I'm female and color-blindness is usually a male thing) for the first time. I developed new floaters a few months ago also. The doctor and I are hopeful that it's not too late to reverse my vision problems. Don't let any doctor tell you that this med is perfectly safe just because he/she's never had to take a patient off of it. They've just been lucky. If you already have eye problems, try something else! It's not worth loosing your sight.
Granted I'm the zebra in a herd of horses, but don't let them tell you it's never going to happen. I also have neuropathy, diabetes II and Sjogrens in spite of being ANA negative for both it and RA.

I also agree the dosage of 200 5xday must be a typo or the dr is crazy. So's the one who told her not to research the internet. I'd think about finding another doctor.

My eye doctor always measured my dosage against my weight every time I went in for a checkup. I don't believe this is as rare as they would have you think.

I am going back to the op doc on the 6th of April for a fluorescein angio & a repeat visual screen to see how much damage plaquenil had done to my right eye. I'll keep you posted. She's hoping it will reverse itself but it takes a while for plaquenil to clear the body after stopping it. I don't know what the RA doc will do next. The 2 docs have talked. The op doc has the last word. As long as I weighed 200 it was okay but at 160 it became toxic to my system.

I have significant vision damage in one eye as well and I have already told my doctors that if medication becomes necessary, steroids and antimalarials (Plaquenil at least) are out of the question. I cannot live with further risk to my vision.....

Fortunately, my primary is very supportive and totally agrees.

I've been on plaq since 2004 and haven't had any problems with my vision. My eye doc suggests only one visual field test a year and a regular eye exam on the other visit.

I too heard it was rare to have the med affect my eyes but I ALWAYS keep my appts to have my eyes checked and my eye doctor tells me if I ever notice a difference in my vision to call/come in right away.

If it wasn't for 6 month visual fields we wouldn't have caught this soon enough. My visual field 6 months ago showed very minor changes and this one last week showed more drastic changes. You might rethink how often you want to do visual fields and do a corneal topographography (sp?) at least once every couple of years if normal, more often if not. Thank goodness I have an op doc that believes in keeping on top of checks for plaquenil patients.

The grid is available online, the link can be found in the second topic "Lupus Resources". Cheers,