APS and shogrens

Hi all, I've not posted for a while and don't want to tempt fate but on the whole am quite well at the moment. I have recently been tested for shogrens as I'm having really bad pains in my eyes but this only happens during the night, all tests were negative although my rheumatologist has explained that you can have a false negative. Diagnosed with APS a few months ago, could this be a side effect of APS?

13 Replies

  • Glad things are good for you, in terms of Sjogrens Disease it often does go with Hughes Syndrome, I know when they gave me the Schirmer Eye Test, my eyes were very very dry, I use an over the counter product which improves things a lot. MaryF

  • Thanks, I use an over the counter artificial tears but am waking during the night in a lot of pain in both eyes, maybe I need to see my GP for something better.

  • I would consider popping to the optician and asking for the most senior one to take a look with their most advanced equipment to see if they can see anything, I use them like this all the time, especially for my daughter as she is on Plaquenil so at least once a year we have a long check up. MaryF

  • Thank you I will do that.

  • No problem, it is always best to check out eyes even if it is nothing, MaryF

  • Hey Mary you mention plaque nil. Is this the same as clopidogrel? I have noticed since being on this that my eyesight has blurred. When I wake up in the morning it is fine but after taking my meds I have blurred vision. It's only minor bug it is noticeable.

  • No, different drugs: Clopidogrel is an anti platelet medication and Plaquenil is an antimalarial, often prescribed for Lupus, but increasingly for Hughes Syndrome and Sjogrens due to the positive effect on fatigue. Do keep a record of any symptoms, to bring up at your next appointment, and write your history in short bullet points, easy to forget on the day. MaryF

  • Hi Christine

    I have the same issues with my eyes. I am positive for APS but not for sjogrens.

    I have been to the eye clinic in Bath and they said that my eyes become dry at night and my eyelid sticks to the eyeball. they have prescribed 'Viscotears' (Carbomer 2%) eye drops and this works fine.


  • Hi I just had my eyes tested too was all blued and she told me to phoned the doctors up cos my eyes was so dry so now on eye drops and have to get some more glasses x

  • I have Sjogrens with APS alongside too. Can I just suggest that if you are using eye drops and gels every day then it's suggested that you use preservative free versions which are pretty widely available. Some of these work out quite expensive so it might be an idea to ask your GP for a prescription. (I personally use Hyloforte drops and VitA-Pos ointment but there are various brands out there.)

  • Hi,

    I have APS and also tested negative for Sjögrens. I have had a lot of neurological problems with my Eyes before I was properly anticoagulated. (Doublevision, lost my vision on the right eye for some minutes etc etc).

    Two years ago I was remited to an Eye-Specialist and he says I have Blefarit. After I used Ultracortenol on my eyelids once every week I was better and now I only use them sporadically if it gets worse.

    As to the dry Eyes he has told me I must have eyedrops with OIL. APS destroys my natural tears in a way. ( It is too difficult for me to explain in English). You can get it over the counter but it is expensive. To begin with he told me to use it 7 times a day!

    They are called here in Sweden: "Systane ultra" (green paper around the small bottle, not the violet because that one makes it worse) . It is expensive though.

    Best wishes from Kerstin

  • Hi I also have aps and have just started getting issue with my eyes it feels like there is something in them like an eye lash or something but there is nothing in there I also went to the options who also said there was nothing in my eyes so it is intestine to hear that you too are having problems I hope you gat sorted, if it keeps on then I may go to my doctor


  • Thanks everyone for your comments. I've been to the opticians who have reassured me that I have dry eyes. I've bought an eye mask and two different types of drops, one for the day and a thicker one for nighttime, this seems to be working well at the moment. Xx

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