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Old 03-17-2009, 06:21 PM   #1
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Plaquenil retinopathy

I have recently been diagnosed with Plaquenil retinopathy from 14 years of use with Plaquenil. I went off it on Feb 2 and my vision is still getting worse. Does anyone have vision problems from Plaquenil? If so, did your vision loss progress? I'm having a great deal of difficulty seeing.

 
Old 03-17-2009, 06:49 PM   #2
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Re: Plaquenil retinopathy

I will have to relate this to my eye doctor. He says they have never seen a case that Plaquenil had caused any damage. I go every 6 months, at my rheumatologists request. I have only been on it 4 years - almost. But it has done wonders for me, sure hope I don't have to stop it. I wish you the best and hope you recover. Do they think it will reverse since you stopped the Plaquenil?

 
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Old 03-18-2009, 06:20 AM   #3
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Re: Plaquenil retinopathy

BobiM, hi. I'm very sorry to read about your retinopathy. I've taken Plaquenil for 9+ years without any problem. At my rheumie's insistence, I have seen my eye doctor every 6 months for a "field vision test".

In the third edition of his lupus hardcover, in his discussion of Plaquenil, Dr. Daniel Wallace writes about risk, ongoing eye testing, what happens after you cease, etc. His book is in most libraries. Maybe something there could help?

Did your eye dr. work with your rheumie to ascertain that Plaquenil is *the only possible culprit* for your retinopathy? I ask that because I've read about *non-Plaquenil* eye problems seen in lupus patients. For example, vision changes caused by clots in retinal artery due to antiphospholipid syndrome (APS); steroid side effects like glaucoma & cataracts; inflammation or swelling of optic nerve; etc.

I have no clue how these eye problems are distinguished from another, or how many OTHER causes are possible, in lupus & in the general population, too. If I were you, I'd want BOTH doctors---eye & rheumie--to cover ALL possible bases & discuss everything THOROUGHLY with you.

I hope you get more info & big improvement soon. Sending you best wishes, Vee

Last edited by VeeJ; 03-18-2009 at 06:21 AM. Reason: spelling

 
Old 03-18-2009, 10:41 AM   #4
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Re: Plaquenil retinopathy

bobiM, I flunked my visual field test after being on plaquenil for almost two years. I was immediately taken off the meds and sent to Wash U. for extensive eye testing. It is an easy test, no pain or anything. You just sit in a room with little tiny things in your bottom lid and look into different machines and wear blindfolds etc. I did it so long ago I don't remember everything. Anyway the tests proved my problem was not from the plaquenil. I just really have weird eyes. However I have not been put back on plaquenil and I would like to try it again because it seemed to help so much.

Glojer

 
Old 03-18-2009, 04:39 PM   #5
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Re: Plaquenil retinopathy

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Originally Posted by Glojer View Post
bobiM, I flunked my visual field test after being on plaquenil for almost two years. I was immediately taken off the meds and sent to Wash U. for extensive eye testing. It is an easy test, no pain or anything. You just sit in a room with little tiny things in your bottom lid and look into different machines and wear blindfolds etc. I did it so long ago I don't remember everything. Anyway the tests proved my problem was not from the plaquenil. I just really have weird eyes. However I have not been put back on plaquenil and I would like to try it again because it seemed to help so much.

Glojer
That is what happened to me about 6 years ago. They took me off it. Then I was getting terrible cutaneous vasculitis which had totally diasappeared when I was on Plaq. So they did another VF and it was normal at that point (it reversed)so they said to go back on it. That was my mistake. Then my visual fields started to become abnormal again. I have Sjogren's syndrome and my eyes are VERY dry so they figured it must be the dry eyes that was causing it. So, I continued on with the Plaquenil until I started noticing contrast problems. Then they sent me to Will Eye where they did a Multi-focal Erg. That showed that I had toxicity (from Plaquenil) so I stopped it immediately. But, my vision has continued to worsen because Plaq has a long half life.

My doctors kept telling me how rare it is and didn't diagnose it because of that. I might add that all 3 of my eye doctors missed it - retina doc, cornea doc and neuro-ophthalmologist (who they sent me to). I do not have the classic bull's eye appearance yet. But, there are rare cases where it never appears on the retina so I'm the very rare case.

But, to ease everyone's mind who is afraid of Plaq., use an Amsler Grid weekly, get your VF done every 6 months and get off the drug if you have any abnormalities. If you get it early it may be reversible.

My retinopathy is irreversible because I've been on it for so long and had undiagnosed retinopathy for years.

Last edited by BobiM; 03-18-2009 at 04:40 PM.

 
Old 03-18-2009, 06:21 PM   #6
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Re: Plaquenil retinopathy

Bobi, I didn't know you have Sjogren's. The only woman I've met with it has severe optic neuropathy, but I don't know how that differs from retinopathy... I think her drs. also had her avoid Plaquenil, not wanting any add-on risk since she already had (they presumed) a Sjogren's-related eye condition.

Are you able to take any other systemic med used in Sjogren's? I know my acquaintance told me various things she took, but I can't remember.

Your cautions and reminders are valuable---thank you. Best wishes, Vee

 
Old 03-19-2009, 12:00 PM   #7
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Re: Plaquenil retinopathy

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Originally Posted by VeeJ View Post
Bobi, I didn't know you have Sjogren's. The only woman I've met with it has severe optic neuropathy, but I don't know how that differs from retinopathy... I think her drs. also had her avoid Plaquenil, not wanting any add-on risk since she already had (they presumed) a Sjogren's-related eye condition.

Are you able to take any other systemic med used in Sjogren's? I know my acquaintance told me various things she took, but I can't remember.

Your cautions and reminders are valuable---thank you. Best wishes, Vee
Optic neuritis is a rare complication of Sjogren's. I'm sorry your friend has it. I understand it isn't too pleasant.

I don't know what new med my rheumy will be putting me on. I know he mentioned a few like Colchicine and Rituxan. Time will tell. Since the cutaneous vasculitis hasn't returned yet I'm not clamoring to get on a new drug.

 
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