After several years of complaining about strange visual symptoms I have finally been diagnosed with this condition due to the drug Hydroxychloroquine (HCQ). About five years ago I noticed that when I looked out of the window on a bright day I could see gold/yellow sparks flashing in my vision. At about the same time I started to notice that when I was reading at night, I could see grey blotches across the page which would then change to yellow. I had eye tests done but my eyes looked healthy and my vision was good. I began to struggle with bright lights which seemed dazzling and felt very uncomfortable.
These symptoms gradually got more pronounced, the circle of scintillating yellow lights becoming worse and last year I noticed that when I was sorting out my pills in bright light, I had difficulty seeing the smaller ones - one minute the 1 mg pred. tablet was there and the next second it was not! I found that I could not read read writing unless it was done in a dark thick pen. Despite all this, when I had my eyes tested all was said to be well and I continued to take the HCQ.
This year I read a letter in News and Views from a member who had experienced the same symptoms and she had been given this diagnosis. As a result of reading her letter I felt the time had come to be assertive and ask for more investigations to be done. I saw a female ophthalmologist from the Birmingham and Midland eye hospital. She could not account for the symptoms but she agreed to arrange for me to have some more specialist tests and scans. There are some excellent new scanners. The results of these further tests showed that I had a problem caused by the HCQ.
Initially I was filled with fury because this had not been picked up earlier and then I was filled with sorrow because it was something else to cope with on top of everything else but now I have accepted it . It will take 6-9 months for the drug to leave my system. The prognosis is uncertain. But I hope for the best.....
This is a fairly rare occurrence so please don't panic and stop the drug but make sure that you get your eyes investigated at an eye hospital which has up to date equipment.
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Jude65
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Yes the same thing happened to me- the drug Quinine caused similar symptoms and had to have bilateral lens replacements.
Talking about disgusted, furious, disappointed all in one! This happened tome when I already had to have 4 back surgeries and neck surgery as well as knee replacements- ALL of those the direct result of being on Prednisone for too long- this basically ruined my life as I had known it- had to go on ill-health benefits,lost an extremely well paid job in Government and saw the end of my career.... I had to stop work in 2008 and had been sitting at home since- cannot drive anymore due to root nerve damage in my right leg...had to sell my beautiful shIny Mercedes Benz- what could is it sitting in the garage? Now totally dependent on my dear husband- the best in the world!!!
Over and above the effects from Lupus-uncontrolled blood pressure,muscles, joints, severe headaches, dry mouth, skin lesions and FOREVER itching, burning- on top of all these, I now have this horrible back pains and nerve pains down my legs and arms.
I don't even want to go to to doctors anymore- to me it feels like I had been paying them thousands just to break my body- I try to handle my symtoms, but I am concerned about my blood pres....but I suppose I am 59 and if something fatal happens and i go "upwards" now, I would be without ANY pain AT LAST!!!
I am convinced that I was not of any help to you, but I became livid again when I read about your eyes .... does the medicine world not know how to treat people like us without ruining our lives?????
Hi there - I have just joined this site and have found it to be one of the best for finding out information on lupus. I was so interested to read your blog - I am experiencing exactly the same symptoms as you have mentioned and I too was left on too high dosages for way too long....and its just made me think now that all these symptoms are related to the prednisone - which I also feel has ruined my life - and thank goodness too for my wonderful understanding husband - we sound like we have very similar circumstances - I would love to hear more about your symptoms - how did the discover you had root nerve damage and how did you come to have back and neck surgery? I ask this as I am suffering so badly and have been for the past two years worse and worse with chronic neck and back pain and also get pain down my legs and arms - and also alot of pins and needles and feelings of my limbs going limp/numb?? I would really appreciate you putting any light on any of this for me? I feel we all have to make our own diagnosis through each other....................as we really don't get much from the doctors....I am also forever itching - My consultant says I have fibro and vasculitis too....I also have chronic burning constantly - especially my back - and constant sweating?? Thanks for any advice and info - much appreciated. Keep well!!xx
Would you believe that was one of the first things I ,mentioned in my earliest blogs.I was very fortunate to have decided to go for my eye test with my optician and showed him the Hydroxy patient leaflet.Cosequently although I am on the Hydroxy I will be having regular eye checks at the hospital.themost annoying thing is,when I questioned my reumy about my doubts on taking Hydroxy he actually said to me'if you don't want to take the medication,what do you expect us to do'.How about that for making you feel less alarmed.As I said to him at the time,'you don't have to take the medication and i am scared'.Off to the hospital in a mo.No wonder we lose faith.I wish you well.
You have really been through it. Thank you for replying and telling us your story. How are your eyes now?
You really have been through hell!I am new to Hydroxy,been on it three months and had to go and have my eyes tested a few weeks ago as i noticed changes with my eyesight,they said my eyes are ok.Thank you for making us aware of this,,i will keep a check on it.Regards Dawn.
Thank you for posting this. I've been on Hydroxy for about three years and only just gone for an eye test. (My first one.) Nothing serious, just a slight prescription for reading, watching t.v etc.. but have wondered if this is down to the Hydroxy.
I've also experienced like yellow dots in my vision. The only way I can think to describe them is like snowflakes falling but then disappearing and re-appearing again. It's only happened once though. Was it like that for you Jude? It may be nothing.. but I'd definately prefer to be aware if there could be something wrong in the future.
What were the scans that you have done at the eye hospital?
My gold/yellow lights were initially more like small flashing sparks, not dots. When I turned my head away from the light they disappeared. If the dots have only happened once I think you should not worry about them. The first few years of taking the drug doesn't seem to cause problems.The dose is important and a safe dose should be linked to your weight.
I will find out more details of the names of the tests and scans that were used and post them up on healthunlocked. It may take me a while to get this information as I am not attending the eye hospital for 2 months.
Phew, maybe it was just a one off then. Gets you worrying though doesn't it. I'll still be keeping a close (hopefully good) eye on this from now on though.. just incase. Think it's important we all know the "could be's" and consequences, I never would have thought about needing to go for any further eye scans.. So thank you again. And also for getting the info
I have had color loss in one eye. . Everything looks like a sepia type picture but only at night. i also have issues in my peripheral vision with light changes. . I feel like something is there when it isnt. . Scared the heck out of me a couple times since i live alone. . I ak baci to the eye dr this week. . I will let u know what they say.
I think those flashing sparks are called scotomas? To me they look like tiny streaking comets at times. I first got them years go when in a bad phase of flares. Since then have only had them occasionally, and not at all recently during my first 4 months on plaquenil.
I do an amsler eye test once a week though, and aim to be very cautious re my eyes. But gosh the plaquenil seems to be helping me so much
Are you all on plaque nil ? Or another version of hydroxy, if yes, which version?
I know what those streaking comets are as I had those 15 years ago just before I temporarily lost the sight in both eyes due to APS. Never had these again once I started on small dose of aspirin and later Warfarin. I think that my circular scintillating yellow and now sometimes white are something different but yes they may be called scotomas. I will look it up.
I'm glad the plaquenil helping you and its great that you do the amsler eye test regularly.
Wish you all the best, Jude! And thanks for all the details on this: it has been on my mind, and being as informed as poss about it seems v important to me
I'm sorry about your problem,But i'm so glad you are a member of Lupus u/k
and reading the new & Views lest you may not have picked this up.
I hope things will improve.
But i must stress to other readers reading your blog,that it does not happen to us all,.but also we should be well aware that this happens and i thank you for that
Jude and Magda, I am so very sorry that you have had to experience this.
It seems so cruel and unfair when the drugs intended to make us well seem to turn against us.
I have taken Plaquenil for the past 12 years continuously. When I started taking it, I was told that I had to see an ophthalmologist for two eye tests that were absolutely mandatory on a regular basis: the visual field test (every 6 months) and the computerized 3D retinal scan (once a year).
I have had a visual field test done every 6 months the entire time I've been taking Plaquenil. if anyone is not familiar with this test, I'll describe it. You use one eye to look into a box at a dark field. A small dot of light appears for about 2 seconds. When you see the light, you push the button on a small hand-held device so the computer records that you saw the dot of light. For the next 5 minutes, lights appear and disappear all over the field you are gazing at, first near the center, then farther and farther away until your peripheral vision is tested. At the same time, the dots become smaller and less bright. When you complete the test with one eye, you repeat it with the other eye. If there are any regions where you do not see the light or see only the brightest lights, this indicates that vision loss has already begun in that region of the visual field for that eye. If that happens, I am to stop taking Plaquenil.
Once a year, I have my retinas (lining of the inside of the back of each eyeball) scanned for any degeneration which Plaquenil can cause.The center of this retina is called the macula which lies over the area where the optic nerve meets the outside of the back of the eye. The scanner records the inner surface shape of the retina and macula, but more importantly, the thickness of this lining tissue. Any thinning of tissue since the previous scan means that I stop taking Plaquenil immediately before I am aware of any vision loss.
I hope that both of these tests are available to every patient who is taking Plaquenil or any other form of the hydroxychloroquinine drugs!! If you can only have one of the tests done, I would choose the scan because it can detect degeneration of the macula BEFORE you even notice any change in your vision and before the visual field test would indicate a loss has occurred. Of course, the visual field test is less expensive.
These tests are so very important! As Jude said it is only a small percentage of patients on Plaquenil who will experience the side effect of vision loss. I can attest to all the good things plaquenil can do for us: decreasing joint pain by decreasing the immune system attack on the tissue there. For some patients at times, taking steroids may not be necessary because of the relief they get from taking Plaquenil.
I hope that everyone on Plaquenil will read this post! It is important to have the proper tests done regularly while taking this drug. But Jude's and Magda's descriptions of their symptoms of vision loss are so valuable to us!! Without hearing from a patient who experienced the symptoms firsthand, we really don't know whether the spots, dots and sparkles we may be seeing are important enough to call a doctor!
This post underlines the value of this website as well. There are things that we patients can teach each other that no one else can !
Lorelel, thank you for taking the time to give this clear and detailed explanation of the tests you have done on a regular basis. You are really well looked after. More of us should demand such good care. Perhaps this blog topic will enable more of us to demand it.
I am a pharmacist who though I am aware of this possible side effect do not know how ofte a patient should be having these tests.Perhaps a specialist in this field could advice.
I feel like I am well looked after also. I think that is partly because I am willing to change doctors if I don't think they are giving me the right care. When my lupus was first diagnosed, I went to a rheumatologist who would not put me on Plaquenil or prednisone because he said the side effects were too severe. I resented that. I found a new rheumie who, instead, explained the side effects to me and let me choose whether or not I wanted to risk the side effects after considering the potential benefits, too.
The other factor in my favor is that I have really good private health insurance as a benefit of my husband's job. Here in the States, that is really important.
So I feel like the care I get is partly within my control but I'm lucky that I can afford it.
Hi - I have been taking plaquenil since i was 16( i am now 32). For the last three years i have had yearly checkups at the local eye hospital to have the field test and the 3d image done and last time i was there i mentioned the article i saw in news and views and he did extra checks(i cant remember what it was) but all seemed fine. I have never really had any problems being on it continuously for so long althought i do occasionally see shooting stars and do not like driving at night because of the glare from headlights - this was the main reason i was refered to the eye hospiatl as its an extremely early symptom of cataracts im told. Before seeing the article in news and views i wasnt aware of the macular toxity/loss of vision issue but my doctor is always asking me about my eyes and making sure i have no problems with them. I will now always ask for the extra tests at the hospital. I have been on meds for so long now I have a constant fear in the back of my mind i am going to start getting some serious side effects soon - thankfully to date they have not been too bad.
Hi Tamsin, good to hear from you (I think met at the LUPUS UK contacts course in Coventry two years ago). Long may your freedom from the untoward effects of the drugs last!
Thank you for making us aware of this. I too take Hydroxychloroquine but didn't know that this could happen! I do have regular eye tests but will definitely be more vigilant with my sight, it's another thing we could all do without! I hope you're well and your sight improves! x
Hi Really sorry to hear what you are going through. I`m going through a similiar eye problem but plaq has been ruled out twice!!
I have lost some peripheral vision in both eyes & have lost a "patch" of sight in my left eye. This was picked up during my yearly eye tests through spec savers.
But it has now been decided that i have retinal vasculitus due to my lupus sle.. I also have a problem with floaters, grey fuzzy patches, etc etc. Can no longer read books etc
I currently on a methoject & pred combo to try & combat the problem.
I was very sorry to hear that you, too, are having eye problems, especially that you can no longer read. I also have two black floaters but i have got used to these. What is methoject? Will the sight improve if the vasculitis improves. I hope so for your sake. How did they diagnose the vasculitis?
Methoject... is mtx / methotrexate by injection... i can do them so can my close family have all been taught (incase my wrists are bad etc)... They dont seem to know to much at mo... but i have had many of the probs you descibe... it has taken me 2 years nearly & 3 opthalmists at the hosp to diagnose this... because as you they thought it was due to the plaq/ quinoric...
I have many floaters ~ wish i just had 2 :o)
Vasculitus was seen very slightly by spec savers... then by an eye doc ( during a flare)... I have always said it fluctates with the lupus... I once had a flare in eyes for 10 days this was chronic & would never wish it upon my worst enemy... Then wasn`t seen by the next Dr ( who knows ;o) ) But was then seen by a new eye Dr who looked into my eyes with all the lights / magnifiers etc & saw vasculitus... was soo shocked used cottonbuds to push the eye ball up all round in both eyes.. very sickening... but hey never mind its all meant to be good ;o) xx
Zona, thank you for passing your experience onto us all. I had no idea previously that we could get so much eye trouble both related to the inflammation of the lupus and the drugs. I did know that steroids could cause cataracts but never thought I would get toxicity due to hydroxychloroquine as it is supposed to be rare. This site is wonderful for enlightening us.
Thanks for this and I so wished I had found this a year or so ago. Mad now with myself for not finding it when I was researching my symptoms a year ago.
I went to my optician last June (2012) with what he diagnosed as 'Scintillating Scotoma'. I had all the tests with the visual filed test clearly showing a partial ring scotoma (both eyes). No other symptoms on the retinal scans etc. I was told therefore that this was not to do with my eyes but could be neurological especially as it was in both eyes. To cut this as short as I can, after various further tests both ophthalmic and neurological (including an MRI brain scan) and nothing was found I was sent away and told it may just disappear.
I must stress that at all points I asked if it could be due to the Plaquenil - but was told definitely not. And my rheumy was made aware. I had a rheumy appt in October 2012, and he dismissed this symptom, and even extended the time before my next appt to a year (Oct 2013).
A year later (June 2013) it has got worse, the scotoma is now a complete do-nut, and is smaller and affecting my reading, so I followed up.
My optician found some retinal damage this time and swiftly got me to an ophthalmologist, he and the ophthalmologist are in no doubt it is caused by the plaquenil. The damage now is so severe I have stopped driving with serious affects now on my independence and quality of life.
I see my rheumy tomorrow - I had to beg for an early appt, as he was convinced at first it was nothing to do with the Plaquenil as it is 'so rare'. I am his first case, but he has now got the ophthalmologists report and is concerned.
So my advice to everyone is...don't let them tell you it is not Plaquenil related just because a) the optical tests show nothing (yet) or b) it is rare. If you have these flashing lights change your medication. Last year it was not so severe and I could still drive. If it gets much worse (and I have been told it will get worse before it stops as the drug takes so long to get out of the body) I will not be able to read.
So sorry to hear about your situation! I too am going thru something very similar. How are you doing now? Yes, this Plaquenil toxicity is not as rare as I was led to believe by my Rheum and I had a very negligent eye Dr. as well. I am amazed at how incompetent so many Dr.s are on this subject due to their not being adequately educated themselves. The standard of care put out by the AAO.Org should be kept up on by prescibing Dr.s and eye Dr.s checking for this condition and it is so often not! That is what happened in my case. And the sad thing is I micro manage everything in my life but the two Dr.s I trusted the most I did not and they were negligent in my care... So I have learned the hard way no matter how good you here a dr. Is... Even from their peers, Be your own advocate and do your own research on line so that you can keep tabs on whether your Doc's are doing what they need to to stay up on things.
I hope you did not lose your ability to read, Eviexxx and just know my heart goes out to you. Don't be mad at yourself, we are not supposed to know more than our Dr.s do, but evidently we have to keep tabs on them as well in the world we live in.
Hi Reesa - sorry to hear you have the same issues with Plaquenil side effects and poor diagnosis. Since stopping the Plaquenil my eyes have settled and not got worse and I have learned to live with the problem. I have given up driving except when conditions are good and I know the area well, and reading is OK for the most part. I struggle with magazines where thay have varying print sizes and photos. And we have installed a small TV for me which I find easier to make out.
Since I first reported my problems with the hydroxychochloroquine toxicity four years ago on this site and stopped taking the drug immediately, things have not got worse. You do get used to it in time. I can read in certain lights but there is no doubt that I don't read as much as I used to as it is a bit of a strain.I do make mistakes in shops when picking coins out of my purse and it is necessary not to feel pressurised if one is slow and the queue is growing behind you! I had to give up driving as I didn't feel safe. It is so maddening to hear that this is still happening to people and that the doctors are still saying that this is rare. It might be but that is no consolation for those of us who have been affected.
It matters to us a great deal when precious eyesite is lost and it is taken lightly by others. My consultant never refers to my eye problems, never asks how my sight is - I think she would rather forget.
Thanks so much for responding to my post. It seems that my eye damage is very similar to yours. My specialist in Boston said I had been toxic for a year and a half. I have a new eye Dr. here in Maine where I live and I will be getting a field vision test on May 18 to see if there has been much change since going off the Plaq. I sure hope not! I am still driving but like you only in areas I'm familiar with and during daylight. Magazines are the hardest to read also. I live alone so I have to drive to get to all my appt.s ... I'm only 51 and just the thought of not being able to makes me feel sick. My former eye Dr. was not following the Standard of care and I am pursuing legal action, but probably won't get to far. A lawyer told me that my Rheumy was "sloppy" and should have been watching my eyes better but I'm learning that here in the US I cannot get compensation for a Mal practice suit for a doc being sloppy. My opinion is that maybe Dr.s would give better care if they WERE held accountable for being SLOPPY!! Oh well, if you think of anything that might be of help feel free to let me know. Thanks, hope all is well
I am very sorry that you are having to go through all this. It's hard to fight these things, especially when one doesn't feel 100% well. I'm not furious with my consultant any more as I know everyone can't be perfect but there does need to be much more awareness amongst the medical profession and patients about the dangers of macular damage.
I just thought I would chime in to clarify a few things. It is easy to get confused regarding the various types of eye symptoms. As an eye doctor, I try my best to educate every patient without causing confusion. It is best to use the EXACT test names because there are literally hundreds of different eye tests that sound very similar to someone who hasn't studied and been in the field for many years.
1. The visual field test for Plaquenil is called a 10-2. It is for the the central 10 degrees of vision which corresponds to the Macula. This is different than a peripheral field test.
2. A standard Fundus photo will not show early macula changes due to the drug.
3. An OCT should be given (Ocular Coherence Tomography) at least once and then repeated within a few years.
Hope this helps.
So sorry many of you have not been monitored more closely.
Thank you, that's very useful. I didn't realise the peripheral field test is separate to the visual fields one. I had numerous visual field tests and a Goldman test. Is the Goldman test the one checking the peripheral field?
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