New diagnoses

Hi all, I have just been diagnosed with SLE and wondered how many of you have your eyes regularly screened from the medication?

I already have a squint and lazy eye along with double vision so really need to be aware of the side effects.

Also, where can I get information on Lupus and what I can expect in the coming months and years...

Many thanks

7 Replies

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  • Hello and welcome! I have SLE for 20 years now and have been on Hydroxychloroquine, Prednisolone and numerous other medications all of that time. I have my eyes tested by a specialist every year, I just had them done last week and thankfully all is well! 😊 Bronagh

  • Hello and welcome,

    I'm also new to this diagnosis, so I don't have much advice. This forum has been really helpful, though, so i would recommend sticking around.

    I had an eye test a few months ago before starting on hydroxychloroquine and will have another in a year. I have had cataracts for a few years, but so far, there's been no problems.

  • You really must get your eyes tested even if you have to pay for it. If you already see an ophthalmologist regularly for existing eye conditions then that doctor will do the necessary tests. Unfortunately the NHS doesn't pay for eye tests advised simply because of taking Plaquinel.

    High Street optometrician eye tests can detect problems starting before you are aware that your eyesight is being affected. Prednisone can also cause eye problems such as cataracts.

    Your GP or rheumatologist might feel able to refer you to an ophthalmologist, given your pre existing conditions.

    The Lupus Foundation of America has the best, most comprehensive up- to- date information that I know of. The British support group is probably worth reading. I haven't looked at it for a couple of years.

  • Hi ndwndw

    Welcome to the forum, hope you will find it helpful. If you've been put on Hydroxy by your Rheumey then he will arrange a regular eye check with the hospital's eye dept. If your like me on steroids then it's a good idea to have your eyes tested regularly at a high street opticicians. I go yearly but as you have other problems too you may need to be seen quicker.

    Info on lupus you can't do better than the lupus uk website and if you want further info you can email Paul Howard for leaflets etc. He also keeps info on specialists if you need to know good ones in your area.

    Hope that's helpful and you keep as well as possible. X

  • Go to the Lupus UK website - a mine of information. It only costs Β£10 per year to be a member & for that you get an amazing quarterly magazine & access to all kinds of literature & information. Best tenner I ever spent!!

  • Hi there,

    Our website provides a lot of information which you might find useful as someone who is newly diagnosed, For example you can download or request a variety of guides about the condition and related topics here

    Generally when people with lupus are prescribed hydroxychloroquine they are advised to have their eyes screened before starting the treatment and then again every 12 months. It is important to mention that you take this medication to the optometrist so that they can perform any additional tests.

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    Hi and welcome;

    I have to have my eyes checked every 6 months due to the medications I take for lupus.

    Hopes this helps

    Wishing you and your family the best!


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