HCQ: do we need to pay more attention to serious ... - LUPUS UK

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HCQ: do we need to pay more attention to serious ocular side effects!👆

Betty909090 profile image

Many lupus sufferers are prescribed Hydroxychloroquine to manage their lupus and a common side effect most often reported is gastrointestinal disturbances eg stomach churning, pain, wind, digestive problems etc BUT prescribers never seem to liaise with ophthalmologists to establish baseline observations of our eyes before we take this drug often for SLE, DLE, SCLE, MCTD, UCTD, CTD etc?

I’m suffering now with a range of eye problems: maculopathy, retinopathy, cataracts, lens deposits and who knows what else?

Dermatologist initially prescribed me HCQ 6 years ago for DLE.

Rheumatologist says it’s dermatology that is responsible.

But dermatology says it’s nephrology because of my lupus nephritis which had flared with a dosage increase around that time,😳🥺😟!

GP scratching her head offering no answers.

No ophthalmology appt as yet so to be safe I’ve stopped it myself .

Anyone else here having to live with all this stressful uncertainty and lack of expert advice?

A good, serious read and fairly recent:

ncbi.nlm.nih.gov/books/NBK5...

15 Replies

I am so very sorry that you are going through all this. There was an interesting comment by a Professor on one of the Lupus UK webinars. He mentioned that modern retinal testing has highlighted that there is more damage caused by HYD than initially thought. At my last appointment, in June, the consultant said that all patients on HYD were going to be contacted by the hospital for screening. Not heard from them yet but I have not been on it sa long as many, many others) It is the same imaging used by opticians but it's the specialist knowledge needed to interpret the images that is cruial, (seemingly they were getting too many false +ve and -ves by opticians). I assume that at some point they will be doing baseline as well as check ups. Hopefully, this is a national initiative across the NHS. Thank you for highlighting this, it's such an important issue. x

Titters profile image
Titters in reply to RosieA

This is a vital issue even in the States. The difference being for me is my rheumatologist will not consider renewing my RX for hydroxy unless ophthalmology has examined my eyes every 6 months. And once a year I have the special intense exam where they can see the retina more thoroughly. Since low dose prednisone has sped up the growth of my cataracts, my opthamologist will remove them soon but only after I get my dry eyes better controlled. I went through a bad 6 months of not using any of the meds for dry eye. The expense was astronomical. 700.00 for a 3 month supply. My pharmacist was able to finally find a “ coupon “. It got me back on the program.

Betty909090 profile image
Betty909090 in reply to RosieA

Hi RosieA,

Many thanks for your kind and sympathetic response.

Just can’t take the risk anymore with HCQ and my deteriorating vision.

Couldn’t get back to you for a few days because of the blurriness but today my vision seems slightly less cloudy/blurry.

My understanding according to that paper is that HCQ can be pretty toxic to vision.

Hopefully some of my visual damage can be reversed in time?

Like most on here felt neglected and abandoned during covid lockdown but now it’s like the various docs don’t want to advise because of departmental etiquette so reasoning that my actual lupus symptoms are reasonably well managed I’ve stopped taking the HCQ!

Still waiting for ophthalmology to give me an appt.🧐

By the way what is HYD?

All the best.

RosieA profile image
RosieA in reply to Betty909090

Sorry, same as HCQ - bit of the old brain fog there. Good luck on your appointment. x

Hi, ask your GP to sent a request for advice and Guidance to ophthalmology, nephrology and rheumatology. This is done via the online system the secretary uses and they can send a note to each department asking who deals with it. The departments will respond and then the GP will take the referral to the correct team. It’s by far the quickest way to deal with it. Alternatively you can call the secretary from each department ask then to check with your consultant who should do it. I also take this medication and have yearly eye tests

Betty909090 profile image
Betty909090 in reply to Sus2372

Hi Sus2372,

Thanks for responding.

I’ve managed to get a NHS hospital ophthalmology appt but there’s a very long wait. It’s going to be at least 10 months. 😰

Regards

I was very interested and actually grateful and relieved to read your article. At my most recent rheumatology appointment in June this year, it was after 4 challenging years, finally confirmed that I have SLE Lupus. It was recommended that I take HCQ but I have held off due to the ocular side effects I have read about. I have discussed this with my optician who has taken a baseline test in preparation for me taking HCQ and he seemed very relaxed about me taking it. What is particularly concerning is that from the extensive research I have done, it seems that once damage to the eyes (in particular retinopathy - there is no cure for this) has happened, it cannot be reversed and that is particularly frightening. The over riding factor here regarding ocular side effects is the time it takes to be seen and treated and time is critical to prevent further damage. I live alone and cannot risk taking something that could compromise my eyesight (I already have cataracts). Being a artist, albeit on an amateur level, not being able to see would be devastating enough let alone coping with daily life. Your article has been the most frank and honest yet and given me a great deal of food for thought. I do think that the ocular side effect of taking HCQ is much played down and that is a matter of concern as having Lupus is bad enough.

Hi Purplebox,

Totally agree with your all your comments and perceptive remarks about HCQ.

I too live alone and my deteriorating vision frightens me.

What also scares me is that with HCQ it remains in the body for many months and the damage caused to vision is irreversible.

I’m still on MMF which hopefully will keep all my lupus symptoms at bay including my lupus nephritis?

I very much feel that I should have stopped it last year rather than around stopping it 3/4 months ago.

Good to hear that many on HCQ are being monitored by ophthalmologists.

But in my case and I expect in many others the liaison between departments responsible for comprehensive lupus care often falls short?

Our eyes are precious!

Regards.

Well I have been seeing an ophthalmologist once a year but that started after 5 years. The person who prescribes the drug should do the referral and it should be checked at your regular review - but that all depends on everyone receiving the best service! My ophthalmologist always checks my weight because the dosage should be worked out per kg. Not sure what happens when changes happen, whether it's a total stop, reduction in dose and /or treatment - thank goodness I'm not there yet. Good luck and whoever does it, you need an urgent referral to the expert.

Wow that sounds bad. I have had eye exam before starting hydroxy and have a regular exams every 6 months. Started with yearly, but since Im over 10 years on it it was switched to every 6 months. I don't think hydroxy causes all kinds of eye issues thou. My understanding is that it can only cause retinal toxicity and my eye doctors check for that with a retinal scan each 6 months.

Betty909090 profile image
Betty909090 in reply to Tanitani

Hi Tanitani,

Thanks very much for posting.

Perhaps I’ve been unlucky but according to the authors of that study (see above link) it’s not only retinopathy but other aspects to our vision eg cataracts (subscapular):

“…Chloroquine or hydroxychloroquine, a less toxic metabolite of chloroquine, can cause pathologic ocular damage unless strict prescribing and screening guidelines are followed. Ocular damage due to these medications can include corneal deposits, posterior subcapsular lens opacity, ciliary body dysfunction, macular pigment loss, peripheral bone spicule formation, vascular attenuation, and optic disc pallor.

Ocular symptoms of retinopathy associated with these medications can include blurred vision, partial loss of central and peripheral vision and in the later stage, loss of night vision.

Symptoms of corneal deposits include haloes and glare. Clinical research has resulted in precise screening protocols and safe dosing guidelines to prevent ocular toxicity and detect retinal damage at an early stage….”

Happy to hear you’re being closely monitored 👏.

May you continue to enjoy good vision and close monitoring.

Regards.

Tanitani profile image
Tanitani in reply to Betty909090

Good point. I do have a regular exam once a year so im hoping it wpuld cover im pretty sure Im gonna get cataracts if i live long enough as my parents had it even without plaquenil. Im not afraid honestly about other stuff that could be treated, only about retinopathy as getting that doesnt have a treatment other than stopping plaquenil which i really do not want to.

I’m so sorry you’re having to go through this. I was on hydroxy for over 10 years and my eyes were checked regularly by an ophthalmologist. My eyes did okay but I developed hydroxychloriquin hyperpigmentation. Black bruise like spots all over my body including my face. The dermatologist prescribed a cream to lighten the ones on my face thank goodness. I’ve had to go off the hydroxy because of this. Now in the middle of trying different meds to replace it that I don’t react to. ☹️

Hi Betty

I’m sorry you are dealing with this & not had correct eye screening access.

I am glad you have stopped it until you get proper checks.

I agree it’s a lot more common than data shows & played down as not important.

I am dealing with confirmed diagnosed HCQ toxicity & it has been far worse to deal with than my Lupus ever has been over 30 years diagnosed.

I regret the day after 26 years being talked into taking this medication. The side effects & toxic ability was brushed over as something that is very rare and is only a risk after 10-20 years & I also wasn’t offered baseline screening or regular checks.

Within 3 years I had retinal damage in mainly one eye, loss of central vision but loss of pheripheral vision in both eyes. Alongside neuromuscular toxicity which caused severe muscle atrophy & moderate/severe grade neuropathic damage. Ended up with multiple deficiencies & it’s effected my bone marrow & created metoboluc oxygen stress. All downplayed side effects of this med.

I am 14 months on & from stopping HCQ & nerve damage is slowly improving m, muscles are about 50% improved but eye damage has continued.

I can honestly say HCQ has ruined my life & side effects are not monitored correctly. Or worse put down to Lupus. Worst is when you write something about it you get defensive comments down playing the hell your living in as so many love the medication. Which makes a lonely journey of navigating devestating damage & trying to get support & help just worse.

I am glad you have highlighted the issues as if it happens it’s life changing. I’ve seen many write I would rather loose my sight than stop it. No you would not. I’ve gone from relatively healthy lupus sufferer to life changing damage. I’ve lost my sight I can no longer drive lost my independence had to sell my business. I could not go out unaided as could barley walk from gait balance loss & at one point had dysphasia so bad from muscle loss & damage I was chocking on food & have oesophagus damage from throwing up. I looked like a skeleton lost 2 stone. I also have hearing loss in one ear. I am tramautised what this drug has done to me.

I do hope you get the help you need & I’m sorry you have lost sight to this medication x

Hi,

Thanks for posting and sharing your personal experiences with HCQ.

I’m a lot happier without it.

Whilst I blame covid lockdown for the lack of optical checks there is no excuse for the interdepartmental lack of responsibility between dermatology vs rheumatology vs ophthalmology vs nephrology with no doc wanting to take the lead on giving me proper advice!

Meanwhile we as patients suffer with our sight.

May you continue to improve and hopefully my vision will not deteriorate further?👆

This is a horror story and should be addressed properly by all prescribers of HCQ.

REGARDS.

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