Hydroxychloroquine / Plaquenil (HCQ)– retinal damage

A very rare occurrence, but it has just happened to me. In finally getting to the diagnosis of the ‘scintillating scotoma’ I have been complaining about for over a year it appears my retina has been irreversibly damaged. I have had to give up driving on the advice of my ophthalmologist, and if it gets much worse I won’t be able to read.

I will pass on my research and experience here in the hopes it might help someone in the future to avoid , or at least identify this before it gets to the later stages.

1) Check your dose. Your maximum daily dose should be based on IDEAL body weight. If you are overweight you may be getting too high a dose. If you are short, you may be getting too high a dose. A general rule is 6.5mg/kg body weight – based on the correct weight for your height not your actual body weight. Women under 5ft 7ins should get less than 400mg a day.

2) Check your TOTAL dose. This drug builds up in the body and deposits in the retina and cornea, causing the toxicity and resulting eyesight damage. If you have been on it for several years you may be getting close to the maximum total tolerated dose of 1000g (or 1kg). At a 400mg a day dosage this equates to 2,500 days, or 6.8 years. Don’t keep taking it over the 1000g maximum.

3) Of course get regular eye tests. But make sure you get visual field tests, and retinography tests (optimap photographs, and 3D imaging of the retina). Visual acuity is not affected in the early stages. I can still read the bottom line on the optician’s chart! An Amsler Grid is useful for you to test yourself in between optician’s appointments. You are looking for the outer lines of the grid to appear fuzzy or to have disappeared.

4) If the optical tests don’t show any retinal damage, don’t accept this as there being no damage if you have the symptoms. A year ago my retinal tests were clear and the cause of the scotoma was undiagnosed, apparently leaving the medical fraternity baffled. If you have a circle or semi-circle of flashing lights/dots in your field of vision that won’t go away, ask to come off HCQ as a precaution, especially if you are on the topside of the dosage recommendations in 1 and 2 above.

5) If your rheumatologist insists that this is so rare it can’t be possible, don’t be persuaded. Winning the lottery is rarer – but every week someone does! Insist on a change of medication, unless you are prepared to lose your eyesight.

You are the guardian of your own health, make sure you take responsibility for it.

19 Replies

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  • So sorry to hear what has happened to you,

    You answered a question I posted about which tests we should have, so thank you for sharing your experiences.

  • That is so useful, I'm so sorry you had to find it out first, we are lucky to have you sharing this with us so we can take steps to prevent it. Thank you very much.

  • This is why I have always refused hydroxy.. my biggest worry has been shown by your experience

  • So sorry to hear this but so grateful you've shared it with us all. Thankyou and wishing you all the best xxx

  • I've been on HQ for 10 years now and all of a sudden my eyesight has got worse - I put it down to getting older (I'm 46) but I will definitely discuss my options with my consultant now! Thank you! x

  • Thank you so much for sharing this. I can't believe what has happened to you - it's so awful.

    I have worried about it a lot and will definitely be on my guard now.

  • So sorry to hear what you have been through!!!

    Can I also add to your research (thanks for sharing them by the way) - when I EVENTUALLY got somebody to take my symptoms seriously & had a ref to opthalmologist who diagnosed the same toxic build up in my retinas - he told me you shouldnt take it for more than 5yrs (8yr on chloroquin phosphate before being moved onto HCQ that has ' none of those nasty side effects' 12yrs)

    I have to go back in Jan '14 to repeat the tests as IT CONTINUES TO BUILD UP even after youstop taking it!! (Hope I dont have to repeat the 3hrs sat in an electric chair minus wrist n ankle restraints, whilest cheesewiring my eyeballs with electrodes!)

    Disabled from birth, my car is my legs - I am truely terrified at the thought that I could lose all my independance to a drug that I repeatexly reported feeling little/no benefit from & nobody would listen!

  • So sorry to hear this Nanuuk. And I guess the tests that are being organised for me now will involve the cheesewires (eeek!!). I hope it settles for you before it gets too bad to drive.

  • Bugger - I have been on 400mg daily for the last 26 (Yes twenty six) years. I have had problems and now have had two cataracts remeoved on both eyes, I also have glaucoma and do have the field vision tests.

    I am going to try and print this off and send to my specialist and ask for advice. If I can't get it to print off would it be possible for you to mail me? I will try now and get back to you.xx

  • It is OK I have printed it off so I can send it to my doctot. Thank you all.xx

  • A while back suffering from extreme headaches from behind the eyes I was eventually diagnosed with bi-lateral retinal haemorrhages.

    This was after being told that all was ok by an optician.

    I fully agree with the point that if something is not right, dont just accept the situation. Side effects can be life changing.

    Although I cant be 100% sure without checking back in my notes, I may have also been on Hydroxychloroquine / Plaquenil at the time I lost my hearing.

  • Am very grateful: TOP info evie. Best I've found yet on this subject!!!!!

    I have tried to be well informed on this nice starting plaquenil 2 yrs ago (400mg daily) and have had all the vital tests regularly, and take it all ultra seriously cause have a pre-plaquenil history of occasional scotoma-like symptoms and suspected detached retinas, so NHS eye clinic following me closely (also for typical sicca/suspected sjogrens symptoms, for hitch I have a treatment plan & prescrip meds). My first eye clinic appt was with a consultant who specialises in immune system conditions & the eye. He was brilliant, and his treatment very very effective. But since then haven't seen him at appts and the consultants I have seen treat me totally impersonally: ok, I get the tests, but no dialogue at all...I've tried...it's as if they don't even speak English. Weird.

    I'm going on here cause plaquenil is helping me a lot...i dread having to come off it. What meds are you on now evie - figure you've stopped plaquenil?

    Also, had your scotomas become persistent & continual?

    Thanks so much Evie!

  • Thank you Evie for this infor. It has been a concern for me as I am also on 400 mg hydroxy daily and have been for the past two years. I do believe my eyesight has deteriorated but don't know if this is just natural aging process (age 50). I will book an appointment today now you have raised this issue. I am also trying to get down to 200mg daily but when I tried before the joint pain was intense. Here's hoping. Thank you again:) x

  • Thanks for all your positive and supportive comments :)

    Just back from my rheumy appt and we have decided to try nothing for a while, and he is seeing me again at the end of the month. I'm hoping that the Lupus will remain quiet and I can manage any symptoms on NSAIDs, but if not he does not want to go back to the anti-malarial family just in case and will prescribe low dose immuno-supressant. He will see me more regularly to monitor the Lupus really closely. Fingers crossed everyone I can manage this. Just my luck I am off the meds when we are about to get a really nice hot sunny spell, I don't think that will help.

    More ophthalmological tests to follow soon too.

  • I'm so sorry you've had to find this out the hard way, but just wanted to add my thanks too, evie.

    I've printed info off, but I've got optic nerve damage and glaucoma, inoperable. That's why I was wary about being on HCQ...but have been told that it won't make any difference to the damage already there.

    The prognosis isn't too good, I'm 55, research will hopefully move on in the next five years..

    I am dreading the day they say my eyes have deteriorated beyond being able to drive. I'm on year two of a three year licence, or until opt con says that it's unsafe.

    Driving is such a luxury...as I don't very often feel well enough to drive, but I do so enjoy the freedom...ok within a few miles radius, but better than four walls of my flat.

    Good luck evie

    hugs to all

    x

  • just started the stuff..200mg twice a day..im 5ft 8 inches tall...i better not say nothing yet,cause im screaming about the prednisone...i will keep this in mind though. thx.

  • I haven't posted here before! For those who had to stop plaquenil due to retina toxicity I wondered if you have improved since then or at least if your vision stabilised? I have been on plaquenil for 10 years for sjogrens syndrome and when I discovered the 2011 American testing guidelines last year I panicked and had 2 out 3 recommended specialised retina tests. I've now also had the mf-ERG after conquering my fear of electrodes and my eyes seem fine but I do not want to gamble with my eyes. I can't decide whether to stop this drug before any toxicity although rare could occur. It worries me a lot. I'd be interested to hear what your long term experiences are of this and if you are having the correct eye tests too. Like what I read here my rheumatologist is also very dismissive of thus issue saying how rare it is in her practice but it doesn't reassure me. My alternative treatments are another can of worms though!

  • I can understand your reluctance to change as all meds have their own drawbacks. My eyes stabilised after a few months so no worse but no improvement possible as the damage has been done. The worst thing about it for me is the lack of independence as it has limited my driving. Other than that I have learned to live with it and although frustrating at times I can work around most things. Fortunately I can still read although pictures take a little longer to decipher, and large print is impossible. Good luck on the hydroxy and hope you are unaffected.

  • I'm so sad to hear this. My independence as someone living alone is paramount too. Even though this is rare according to doctors but maybe not as rare as they say; the consequence of this makes me want to stop taking the drug now. I know the half life of HCQ is so long it could take a year for all of it to clear the system anyway which is why the toxicity can progress once stopped, so even after stopping it, toxicity could theoretically be detected. Sight is precious so I might sacrifice my other organs to keep it and see if I can tolerate mycophenalate or azathioprine. Good luck with your challenge. You never know, maybe they will come up with something to restore that part of the affected retina. Mmrb

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