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:
Query re Rituximab and being licensed treatment for lupus? 
Update following my rheumatology app.
Is there an age limit to LUPUS?
Does anyone know of how to find out if there's a Lupus support group in my area?
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
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.
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.
Sorry, same as HCQ - bit of the old brain fog there. Good luck on your appointment. x