Hydroxychloroquine toxicity : After much pushing on... - LUPUS UK

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Hydroxychloroquine toxicity

61Annie profile image

After much pushing on my part to see a hospital ophthalmologist for an eye check up because I take Hydroxychloroquine, at a recent visit to Specsavers it was noticed there were changes and they made a referral, I was seen very quickly. Unfortunately, the toxicity of this drug has caused irreparable damage to the retina and the consultant said an alternative drug should be found (he’s writing urgently to my rheumatologist).

Have any of you in the Lupus world experienced this and what help did you get ?

30 Replies

Hi yes I’ve been through this and I’m now taking methotrexate x

61Annie profile image
61Annie in reply to svfarmer

I’ve been on Hydroxychloroquine since 1984 and methotrexate for the last 6 years. So will be interested to see what my Rheumatologist comes up with.

#61Annie I am really sorry to read your update. No, I haven't had this. However, when these urgent referrals come through another professional then usually I get a quick call from Rheum advice line. I pray it is same for you.

May I ask what dose of HCQ were you on for all those years?

61Annie profile image
61Annie in reply to Star13

400mg when having a flare, down to 200mg “to keep a lid on things”

Hi AnnieI'm sorry you have been through this. It's been know for years about eye damage with hydroxy chloroquine. My hospital sends everyone on it for an eye exam every year and this has been happening for approximately 10 years so your rheumatologist has no excuse for not listening to you. It's so frustrating that everything is a post code lottery.

I’m on 400 of hydroxychloroquin daily, only for about 2.5 years. I have noticed quite a lot of deterioration in my eyesight and have regular checks but no problems with retina, thank God. They say I have cataracts probably made worse and accelerated by the use of Prednisolone. I hope you get the right help and soon. Thank you for making us aware of this.

Hiya - it might help you to know that I had cataracts from long term use of Prednisolone. The NHS will let them get pretty bad before they operate, but when you do - it is simple, quick, more or less painless and absolutely blooming fantastic to be able to see again. It's horrid to have your eyesight deteriorate - but at least this is one problem that can be fixed. I had my eyes fixed in 2016 - saw a new optician last week, who remarked what a good job the surgeon had done.

I also have small cataracts at 47 from long-term prednisone use (high dose 60 mg at diagnosis and 2.5 mg daily maintenance for 14 years)

I’m so sorry you have this problem. I hope it can be resolved quickly. I’m sure there are different tablets they can give you. Good luck x

Hi 61Annie I am very sorry that what we all fear will happen to all of us at some point with hydroxychloroquine has happened to you. Although you have been told that it is irreparable, hopefully you will notice an improvement when you stop the medication. Best wishes. 💜🦋💚

Hi Annie - this is a horrid thing to have happen to you. Would you consider making a complaint? It won't help you, of course, because the damage is already done, but it might help someone else if your local rheumatology department takes note.

I'm really sorry to hear this - I hope you can get an alternative treatment.

Retinal issues on HCQ are a worry for all of us. Just a reminder to everyone, if you don't get regular hospital checks, Specsavers do an OCT scan for a smallish fee.

My CCG initially wouldn't pay for eye tests, but have now decided to send me to Moorfields, but they cancelled my appointment a couple of months ago, but haven't contacted me again. Yet another appointment to chase up!

All best wishes to you Annie.

are you actually sure have you done a toxicity test to check if it is really toxicity ? could be that it is macular spots not until you are seen by specialist who know what are dealing with it. Hope all goes well and they find a solution with your eyes and meds.

Thank you all for your comments, they are much appreciated

Sorry this isn’t a reply as such but something I thought would be of interest . At my last specsavers appointment I was told I should be seeing a ophtalmologiste yearly because I have been on hydroxyl for over 5 years (it’s more like 17) so I had it down for my telephone consult for this week. However my consultant brought it up , stating there were new guidelines and has referred me asap . She also changed my hydroxyl from 200mg /300mg alternate days to 200mg/200mg/400mg then repeat . Watch this space ..We did discuss stopping it but I have no symptoms , yet ! Of damage and when I tried to stop before I get symptoms like I’m flaring.

Hope this is of interest and you get sorted soon M x

Interesting, do you know what the new guidelines are?

Hi there,

Thanks for sharing your story and so sorry to hear that. I went through something similar but when I was seen at the hospital, they said my eyes were fine bizarrely. I def have notice night vision changes to my right eye but nothing else. However, as I developed hyperpigmentation as a result of toxicity (this was at least confirmed), I opted to stop hydroxychloroquine. This was a few years ago and sadly as no other combination of treatments have been as effective, I’m planning to restart hydroxychloroquine at my next consultation.

May I ask specifically what impact it has had on your eyes if you don’t mind? I’m been weighing up pros and cons for awhile but would still be helpful to learn more about your experience

Hi Annie I am so very sorry this has happened to you. I pay for the hospital grade scan yearly at Specsavers. I was started on Hydroxy in 2009 and took it for ten years without issue ( 400 mg). Then a new Rheumatologist increased my dose to 600 mg. After three months I noticed lines were moving as I tried to read. I looked at the Amsler grid and everything appeared to be moving. I went to Specsavers the following day and they found I had little peripheral vision in my right eye and fluid on both maculars. I was sent to the Macular Unit where they diagnosed macular oedema so I had to come off Hydroxy for over two years. I have just restarted on 200 mg. I really hope your Rheumatologist can help you with treatment xx

I am so sorry about this! I have been taking 200-400 mg of plaquinil for 14 years now, at a dose my retinal specialist says is “overdosed” for my weight (but is the appropriate lupus dose). I am required to see the retinal specialist every 6 months and he does something called an OCT, which takes images of the retinal layers and can detect changes before they ever reach actual vision changes. It seems negligent that you had to demand a vision test for a medicine known to cause this toxicity. With the appropriate monitering, toxicity should be detected early enough to discontinue the medication and prevent visual loss. My retinal specialist tells me that my chance of toxicity increases every year I’m on plaquinil. However it has stabilized my lupus and has kept me from everything but the most mild sun-induced flares. I dread a day when I have to discontinue it.

Hi, I was just taken off of the hydroxychloroquine. If necessary they will add another DMARD in along with the methotrexate. Surely your annual eye tests at the opticians would have picked up something b4 now though? Good luck with it all!

Good try lady.

61Annie profile image
61Annie in reply to AlbertTorre

Please explain your comment

Very unfortunate. I am in Canada. I have been on Plaquenil 400mg since 2003. I used to have a visual field test twice a year. Then, about 5 years ago my doctor said, we should add the OCT. OCT is not covered under our insurance but I still pay for it. Based on the two tests, I feel comfort knowing that till now, my eyes are okay.

Interestingly, at my last visit the doc mentioned that there is indeed new studies regarding Plaquenil use. One finding is that for long term users, the assumed risk was higher than what is actually being seen. Of course this does not help those who have the irreparable damage to their eyes.

I worry about needing to change meds because with Plaquenil and MTX my lupus is very much under control (other than fatigue which I have learned to live with).

Wishing you the best!

I have always had a yearly eye retina check in the eye clinic in the hospital, this should be standard procedure for anyone who’s on Hydroxychloroquine long term. I’m sorry this has happened to you but very glad it was picked up in the opticians.

61Annie May I add that it is well known about retinal toxicity with clinicians. I would advise you to speak with your consultant as to why you weren’t referred to an eye clinic in the hospital for yearly checks also as I work in a hospital pharmacy and we make a note that the patient be reviewed by a certain date/year for annual eye check, the same would or should be printed on your GP prescription in the copy side when you get it back from a community pharmacist (high St pharmacy). It is also down to your GP as shared care to notify you of getting a yearly eye test due to toxicity build up, the eye test is not just a normal eye test or eye scan either. It’s a specialist piece of equipment that only hospital eye clinics have. I advise you to take it further with the Consultant who prescribed Hydroxychloroquine and under care of and write a letter/email of complaint to PALS at the hospital so they can investigate and then make an appointment see your GP and also address to as to why you weren’t advised by your GP also because you must of been getting repeat prescriptions from your GP? Letter/email to practice manager of the GP to investigate. Your care plan has been overlooked and negligence of patient care. Good luck 🤞🏽

I'm on Hydroxychloroquine since January 2021. I experienced hearing problems after 8 months of first taking it. I was referred to the hospital for a hearing test and was told my hearing had changed but it was put down to age and degeneration. I found I was also suffering from titanus which I never had before. I was offered a hearing aid if I wanted to try one out but I felt my hearing had improved a week before the appointment so I said I'd wait and see how I get on. It's okay currently but does pop back some days. Also, I have been having on/off blurred vision since my first Covid vaccine where I went blind on Day 3 for 45 minutes. I suffered numerous reactions which continue to date. I've seen both my optician and an Ophthalmologists who I continue to see every 6 months. The ophthalmologist put me on eye drops for dry eyes and my eyesight didn't improve so he changed the eye drops to another stronger one. I've been on it for several months now but I'm still getting blurred vision when trying to watch television or when trying to read anything using my reading glasses. I picked up conjunctivitis 1 week before Covid lockdown back in March 2020 as well and lost my voice for 3 weeks but I have never had Covid as far as I know. The optician and Ophthalmologist keep giving me the all clear saying my eyesight is fine yet I struggle to see out of reading glasses at times and nobody is listening so I have just given up. Basically I'm getting nowhere and feel very frustrated about the lack of support. I do have large floaters as well and feel this may be the problem but the ophthalmologist said it wasn't.... I hope you find a solution to your problem. I am waiting for a follow up appointment so I will let you know if anything changes.

61Annie profile image
61Annie in reply to Sashappy

Oh my goodness, you have really been through it. How can they say you’re fine when obviously you’re not. Are you able to have a face to face conversation with your GP ? Let them read what you have written. Good luck to you 🙋‍♀️

Sashappy profile image
Sashappy in reply to 61Annie

TBH nobody is listening and it's very difficult to get an appointment. Been waiting nearly 2 years for ones that were postponed during Covid years 20 and 21. I will address it again with the hospital Ophthalmologist at my next visit. Mentioned it again to my Lupus consultant and he just looks at me.

Me too but having been on 40 mg steroid I landed up with Glycoma. After miricle drugs that has gone But now on Hydoroquine Again but already have fast growing cataract The most important theme/ link of us all, do any of us feel any better from any of the drugs we are on.

I am not prepared to damage my sight no matter how ill I become. All these drugs have terrible side effects. Would they put their nearest and dearest on any of them

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