swollen eyes

Hi all

Diagnosed in june 15,  PRM/GCA - just got down to 16mgs preds, still a bit wobbly at that so will sit here for a while. However - I am still struggling with fatigue, I sleep every afternoon but I am really struggling with swollen eyes, the lids swell and become puffy and my vision is blurred. I have been checked out at the ophthalmologist, pressure and optic nerve ok. (They had to tape my lids up to do the test as they are so swollen) He didn't know (or seem to care over much) what it was, but suggested it may be preds. Dentist thinks it could be Sjogrens, I have just had more bloods - waiting for results . The swelling is always there but does vary from day to day. 

Do others suffer from this please?

12 Replies

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  • Hi - yes, I have Sjogren's along with RA and GAS, and have swollen eyelids most of the time. I've had blepharitis also, which took some getting rid of. I have drops several times a day - gel tears is good - ordinary eyedrops don't last long enough.

  • Thanks Venezia! - I put drops in 2 or 3 times a day, but they dont really help and looking at close work computer, reading etc very difficult. Thank you for your reply, its getting me down at the moment.

  • Lesley, yes, I did experience swollen eyelids together with facial swelling  with GCA and whilst on Pred at the higher doses, in fact my eyes looked like little slits in the midst of all the swelling for some time.  I realised just how awful I looked when I saw myself in a photo!  I went through a period of Sjogren's being suspected after having a severe sore throat which left me with long term swollen glands and a particularly dry mouth where I was waking up in the night with my tongue stuck to its roof.  Lymphoma was also queried and ruled out and I was finally diagnosed with Mickulitz's Syndrome which is linked to Sjogren's but, unlike Sjogren's, does resolve in time.  Apart from the inflammation of GCA, your ophthalmologist could be right in suggesting Pred as the possible culprit, in which case with any luck the swelling will resolve as you reduce down to the lower doses.

  • Thanks Celtic, That sound like me, like little slits in my face - I look awful. Which, when I am at work is really embarrassing as well. Apparently, lots of my bloods are 'odd; so the GP has done another full screen so we will see what that shows. 

    Many thanks for your reply 

  • It could be either. I have sjorgrens and my eyes are always red, puffy and hurt...but I wouldnt say slitty. However, when I was recently taking pred daily, they were much worse....bug that calmed down

  • Sorry, that replied without me meaning to send yet! Anyway, fingers crossed it's the pred and it will sort itself out soon. If they are sore, I find viscotears really helpful. Good luckx

  • Thanks for sharing your experience. It makes every day tasks really quite difficult. 

  • My rheumy suspects Sjogren's. I certainly have the puffy and dry eyes. However, I also have chronic sinusitis and, at the moment, tree pollen allergy. You can imagine what I look like. I am due an appointment with both ENT and rheumy about now, but the appointment system at the local hospital is totally disorganised. 

  • Poor you. It's a nightmare isn't it! 

  • YES !! My eyes are so swollen (like others have said - look like slits)and I didn't know why.  This has been rather a recent occurrence but have been on pred for 15 months - now down to 10. Can't seem to reduce further? Have diuretics to take but they don't seem to help. My cheeks are also swollen, It really affects my vision! I also have increased inner ocular pressure which my ophthalmologist thinks might be the pred. My vision is blurry and can't get new glasses because my vision constantly changes. I take prescription eye drops for the eye pressure and is has helped. So frustrating. Like others have said - don't even look like myself anymore ;-(

  • It is so difficult at times Alison, like you I seem to have lost myself at the moment, both physically and emotionally, I saw and old friend of 30 years the other day and she didn't recognise me! Not sure who was more embarrassed - thank you for you comments - I wish you well.

  • Lesley - Wish you well too. Nice to have people to commiserate with :-) Everyone on this forum knows so much more than our doctors!!

    Take care and treat yourself with patience and thankful for the sunny days. Blessings......

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