LUPUS UK
21,373 members16,901 posts

Eye sight

Hi my wife has lupus and s l e

We went for a routine eye test and when we stated her meds one was plaquinel the optician asked how long she bn on it and we said about 10 yrs she also asked if she had regular eye tests6 monthly as this drug can affect ur eye sight we said nrver bn told that

Anyway bn hsp and now has developed a mass behind her eye and further investigation now Bing done anyone else come across this problem ?

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It is a common problem with plaquenil I am stunned the doctors did not tell you that , you should have been told to have regular eye tests , please stop the plaquenil immediately if you haven't already and contact your lupus doctor straight away

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Thank u will try and get through to st Thomas lupus clinic in London

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I hope your wife's eye problem will be treated soon and an alternative treatment given for her s l e there are other options , take care .

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I am very sorry to hear your wife is experiencing eye problems. Just over a year ago I suddenly lost all clear vision in my left eye and was referred to Moorfields A&E. After extensive testing they were still unclear as to what the problem was but the fact I had been taking Plaquenil for 15 yrs was a concern and my rheumatologist at St Thomas' told me to stop taking the Plaquenil and I was offered steroids as an alternative but I said I would like to try without.

After a few months I was desperately missing the benefits of the Plaquenil and feeling very uncomfortable and unwell. Meanwhile I was referred to several consultants at Moorfields who came to the conclusion that in spite of an association with sight problems it was not the plaquenil in my case as my problems were only manifesting in one eye and with Plaquenil damage it would definitely be both eyes and I have re started the Plaquenil and am beginning to pick up.

I am waiting to see yet another consultant at Moorfields but I just wanted to say that eye damage when taking Plaquenil is not always a forgone conclusion.

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Thank you

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