Sticky Blood-Hughes Syndrome Support
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Plaquenil and effects on the eyes

Do any of you have experience with the effects of Plaquenil on the eye, and if so, will you please share your thoughts and outcome with me? I have recently begun having problems with my eyes. I have been on Plaquenil for about 15 years with no adverse effects that I am aware of. Like most health care professionals, the eye expert I am seeing seems to think it's better to drag my eye exams out over time, thus leaving me competely stressing about the condition of esp. my right eye. I won't have the final exams on my eye(s) until Dec. 29th. That's a full month after my initial complaint! Meantime, I find the vision in my left eye is "dim", and whether real or imagined, I swear I can "feel" it becoming worse. I stopped taking my Plaquenil a couple days ago, because it feels like the prob in my right eye is worsening. My dr doesn't know. Most the time, I feel on my own as far as handling my drugs. After 15 years, and me with no rheumatologist for the past year, I feel I am better equiped and more knowledgable about my condition than any of the dr's I presently see who have to run for a computer to do research after I tell them my diagnosis.

11 Replies

I too have been having problems with my eyes, not sure if it is just because of a flare or what, spoke to my GP and she said to get my eyes checked at Specsavers again and if no problems there, she will refer me to eye hosp. But my vision is blurred especially in my right eye, sometimes worse than at other times.


Mine, too. Everything seems dimmer, and if I close my left eye, everything is much blurrier than it was. Good luck!!


My vision did get a tad blurry. Then again, my APS caused some vision loss/impairment in my left eye. But since I've been on Plaquenil, I feel better overall. No evidence of toxicity due to the medication. Get checked every 6 months for any changes and eye health.


Hi debs,

Glad you starting to ask questions again, regarding your question

there is a strong symptom of APS of visual disterbences

Visual disturbance


In addition to the flashing lights and zigzag patterns which can accompany headaches and migraines, the person with Hughes Syndrome can experience double vision or sudden visual loss. This can be caused by the brain reacting to disturbances in its supply of blood or by the veins and arteries in the eye being affected.

This could be as suggested above a lack of blood flow so you ned to ensure you eye doc and other docs have ensured blood flow, i would not be happy for you to just stop meds mate we all know are bodies react badly and when we just stop drugs especially something like this drug it can cause reaction and i would recommend you talk to the doc about it also i did a bit of digging and see below

This is taken from the medicens directory i have give the link but it is very long winded but have copied the relevent section which says about side effects on vission you may wanto ask you doc or opthomologist if you have any of these

Ocular effects:

Retinopathy with changes in pigmentation and visual field defects can occur, but appears to be uncommon if the recommended daily dose is not exceeded. In its early form it appears reversible on discontinuation of Plaquenil. If allowed to develop, there may be a risk of progression even after treatment withdrawal.

Patients with retinal changes may be asymptomatic initially, or may have scotomatous vision with paracentral, pericentral ring types, temporal scotomas and abnormal colour vision.

Corneal changes including oedema and opacities have been reported. They are either symptomless or may cause disturbances such as haloes, blurring of vision or photophobia. They may be transient and are reversible on stopping treatment.

Blurring of vision due to a disturbance of accommodation which is dose dependent and reversible may also occur.

hope it helps paddy


Thank you Paddy! Yes it helps. If it makes you feel better, I began to take my Plaquenil again this AM... was freaking out about not taking it too much and the stress is just too much already, I have a big (for me) gathering to pull together by Friday, Saturday at the latest. Will have my husb's brother, sister and brother in law, along with his mom staying at our home. Mom doesn't drive, and lives about 230 miles from us... one of us will have to drive down, get her and bring her back... That translates into about 8 hours in a car... not good for someone with APS, but my poor husb will have worked 14 straight days of 10 hrs, and I am afraid of him falling asleep driving... Dave's sis and BIL live about the same distance in another direction. It will be the first time they have been at my home, and the first time I have done Christmas for them. Can you spell STRESS???????? Yah.. I know I'm almost 50 years old, and this is my house, but it's still very important to me to pull this off, then sleep for the next month or so... I see the eye dr again on the 29th... I know I am hyper aware of every little glitch in my eyesight right now. I don't know if all of these changes are recent or if it's been gradual. I have lots of "floaties", and it seems like I have to blink repeatedly sometimes to get a good look at something. The vision in my right eye is suddenly significantly worse than it has been, tho. I will take this information and go over it with a medical dictionary.. LOL!! Then I will be able to ask educated questions on the 29th. Thank you for all of your time, Paddy! You all are the world to me!


Sheesh! That's a lot of info! So... now I guess I should mention that I am having a problem with "sores" that weep in my nostrils, and the folds of my ears, and one on my cheek... Really intense joint and muscle pain tonight. I think I am going into a full blown flare. DANG!! Heavy sigh.... NOT what I need, but this too shall pass. Looking at everything that's all happening and taking an inventory of all of my symptoms, not just the ones that really bother me, I think I really messed up stopping my plaq even if it was only a few days. Dork, I am sometimes! I get myself all scared, and feel like I am all alone out here in BFE... Not having a rheumy to refer to and run the "weird things" by makes me even more tense... You might not be so happy to have me back! LOL!!! Thank you again!!!


Just to update the entire question about my eye situation, I have now been diagnosed with Sjongen's. I am put on a new drug to help that, and things seem to be going well wtih it. My new rheumy also gave me a TON of handouts with info on Sjongen's and suggestions for products that will help with the dryness in my affected areas. I had long suspected that I had Sjongen's, but was pretty much blown off by my previous rheumy about it, and my issues with dry-mouth in particular were swept aside. Kind of makes me angry that I had to go thru all of this trouble and expense to find out I DO have something I suspected, but since my prev dr didn;t think it was a problem wirth addressing, I went on a couple more YEARS and it escalated to eye problems before I could find someone to help me with it. I had forgotten I need to be my own best advocate!! Put too much faith in a dr who was too busy to do much more than bill for the hours he spent on my case. Live and learn... the alternative makes it kinda tough to do the learning part! :D


Just a note about the sores in my ears and nose: They just now resolved themselves... so by the dates of the prev posts, they were active for at least 2 months!! My new rheumy was very interested in my sores, and even had her PAC come look at them. She's actually concerned about them BREAKING THRU!!! Well... I may get that nose piercing and the bizarre ear piercing I wanted whether I really did or not! ;)


WOW Wojo thats a lot of stuff going on and YEAH on the new Rheumey it is all nice to have a doc that actually listens and tajkes notice. I am glad they fibnally diagnosed the Sjongens we have been saying this for ages but typical docs do not listen. As for this being on your own YOUR NOT you never have been you know we are always here for you when you need us for a rant or just a talk the bars always been open you just had to come in lol.

Well so with the piercing you going for the full punk rock look lol

Plesae keep in touch and YEAH again



Thank you, Paddy! Ya know... sometimes my memory is so full of holes I even forget that I can come here, so please forgive me! LOL! I guess I won't be getting the tattoos I thought I'd get... Maybe I will have to go for the pierced troublemaker look. Gotta tell ya tho... the whole Sjongens thing kinda ticks me off! I had complained of having trouble swallowing food and sometimes almost choking because of not enough saliva when I eat... to a rheumy who's in the top 10 doctors in the Detroit area!!! He just blew me off!! And because he was so on the ball about other things, I let it go and suffered a couple more years with it... only to find out from an eye dr that YES... OF COURSE it's Sjongen's!! arghhh!!!!!



You do not need to say sorry just use us lol

No tattoos hmmm well you need to look at rub on tattoos lol and i completly agree on the whole eminent Doc thing i had a Neurologist who i knew when he was a basic neurologist and he was a pompas arse but then said all in my head and now he is a Professor and a respected Prof well i think he still an ass and we never liked each other lol

so i think its a Specalist Doc issue the start as idiots get to profs and turn to Ass well i must put a caviate on that there are some really nice ones like Prof Hughes !!!

so looks like us against the world again but this time as you will see you have a whole load of friends and again YEAH to Sjongens




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