Anyone have dry or swollen eyes and can check thi... - LUPUS UK


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Anyone have dry or swollen eyes and can check this photo please/ advise on drops?

Melba1 profile image
19 Replies

Hello, hope everyone as ok as possible.

My eyes have been a bit dodgy for a while, most times the lupus has flared and I’ve been in hospital, they’ve been inflamed and red along with the rest of me.

Drs have queried various things, including Sjögrens and deeper inflammation like scleritis.

Husband says it’s piggy- eye- itis! 🐷 🙄🤣

GPs want me to go to the eye unit but I think that would be a bit embarrassing and a waste of their time if I just need some drops for the dryness.

They are very burny, blurry and sore but it feels very surface like rather than deeper this time.

I’ve tried lots of drops and antibiotics in case infection.

Anyone got any good suggestions please? I have lots of work to do but can’t see very well to do it!

I also have vasculitis but both that and the lupus is under control at the moment so maybe not inflammatory in eyes?

Thank you!! 🙂 x

19 Replies
happytulip profile image

They look very sore.

Can you afford to not go to the eye unit? It is you sight after all?

When it comes to eyes and eyesight I am also very cautious because once it's damaged it's damaged. And its coming up to a weekend when they may not be open if it gets worse?

You know you best but I would follow my GP advice if it was relating to my eyes.

PMRpro profile image

"if I just need some drops for the dryness."

You need an assessment of the cause and severity of the problem. Dry eyes are not "just" dry - the lack of tears leads to other problems and that needs the right management. Listen to your GPs.

Barnclown profile image

I am TOTALLY with the others on this: Yes! PLEASE do seek referral to Eye Clinic instinct is that, like me, you need to see the Cornea Team to be checked for filamentary keratitis - although of course ALL aspects of your eyes’ condition must be fully investigated, cause there are several other conditions that can cause these manifestations.

Frankly, am feeling extremely concerned for Cornea chief scared the proverbials off me when he exclaimed in horror at the “chronic ocular surface inflammation” mess that was the condition of my eyes when I finally saw him instead of the ‘general practitioner’ NHS eye clinic consultants who had been prescribing me first line AID dry eyes drops + nighttime gel + meibomian gland treatments for 3 years with...he said I had severe AID-related filamentary keratitis (mainly due to early onset sjogrens, but also lupus & vasculitis) & could go blind without adding immunosuppression drops right away to the drops etc in my treatment plan...& he was RIGHT: I love this guy...been in his care for several years now on Ciclosporin (Ikervis) drops etc, with reviews in clinic every 6 months (except now during COVID 🙄) cause ciclosporin patients need close monitoring

Now even my husband is noticing that my “piggy-eye-itis” (Good one: describes my version vvvv nicely👍🤣🤣🤣🤣) is no where near as miserable now as it had been for years ❤️🍀❤️🍀 Coco

Melba1 profile image

Thanks lupus forum mums! 😍

You spurred me into going to the (very efficient) eye unit.

Lovely ophthalmologist, and as always complicated and multi- faceted with us.

So resolving episcleritis from end of neuro flare a few weeks ago, with Sjögrens on top and rampant conjunctivitis. Rather embarrassingly likely self inflicted because I’d been putting the edge of the eye drop bottles into my eyes because I don’t like the drops from a height 😬 Although he did say Sjögrens had caused abrasions that then made it likely to get infected plus all the cyclo, rituximab, steroids etc reducing immunity but did also tut at the putting the applicators directly onto eye.

Hopefully piggy-eye-itis will quickly resolve!

Thank you all 🙂 xx

Spanielmadlady profile image

Hi I have sjorgens and my eye get itchy gritty,puffy and feel like they are burning. They are made worse by the sun if I dont wear a hat.i use the hypomellose drops and that seems to soothe them.i would go to the eye unit to rule things out and then you know you are safe using an eye drop if that's all you wishes x

MEGS53 profile image

Ouch!! That looks very painful. Please go to an eye hospital asap, or see your GP urgently. Do it now!

Melba1 profile image
Melba1 in reply to MEGS53

Thank you! I went to eye unit, GP thought uvitis but was a mixture of inflammation (episcleritis), dry eye and conjunctivitis - always complicated with us!


MEGS53 profile image
MEGS53 in reply to Melba1

So true. Eye hospital and opthalmologist dx'd me with uvitis but on second visit they weren't so sure. Inflammation, blepharitis and dry eye (pink eye) seemed to be the final dx for me. It only seems to flare when I go outside when it's sunny - you'd think I'd have learnt a lesson by now!! Take care - it does look very painful, xxx

Boudica1 profile image

If they are querying Sjogren's then yes take the referral to the eye clinic.

Sjogren's can and does affect the eyes sometimes quite badly.

I have Sjogren's and I definitely get very dry, gritty and puffy eyes and it can be very sore and painful at times.

The consultant at the eye clinic can not only recognise Sjogren's but can do the tests to diagnose it and refer you to the rheumatologist's. They can help with the right treatment for your eyes and will monitor them to make sure that they are safe and clear from damage caused by the dryness.

You most definitely not going to be wasting their time and will save your eye sight and help with the discomfort.

So do get straight back to your doctor and grab the referral with both hands.

Good luck.


Melba1 profile image
Melba1 in reply to Boudica1

Thank you for the advice! Much appreciated, diagnosis above in reply to Barnclown! 🙂 x

LalSD profile image

Assuming the GP has ruled out of conjunctivitis and any other infection, this one requires a medical visit!!!! I agree with all the suggestions. Or you may consider visiting an optician whilst waiting from the hospital, just for an initial opinion, I would be cautious at all times.

I regularly suffer from dry, red inflamed eyes. It is blurry, burning, sometimes itchy and if I use any mascara(if I am lucky), it feels like a sand grains left inside. Mine is caused by Lupus and blepharitis. I use a gel to wash my eyes (Boots or online). I then follow it up with an eye cream (prescription). I also use baby shampoo not to make my eyes worse . I also have loss of eye lashes and pain. I use eye mask to rest my eyes. Please be careful, unless you know what it is, you can not put hot or cold eye masks on your eyes. If mine are burning, I use clean cooling eye masks and Hycosan Extra Eye Drops.

Now the regime does not work as good as it used to. I recently introduced colloidal silver to wash my face. It helped a bit better. Redness is better. BUT AGAIN mine is belpharitis and dry eye because of lupus. Hope this helps. Lale x

Melba1 profile image
Melba1 in reply to LalSD

Thank you 😍 x

Muff20 profile image

They look sore, must be difficult for you. I have very sore, gritty eyes and the area around my eyes would swell. Sometimes brusied look like I had been hit😲 Now I use 2 different types of drops in a day. Also since being on hydroxcholriquine it's better. Hope you find some relief.

Melba1 profile image
Melba1 in reply to Muff20

Thank you, yes they gave a variety of drops with steroids for mix of dry eye, lupus eye inflammation and conjunctivitis! Feeling (and looking 🐷👁🤣) much better now 🙂 x

Muff20 profile image
Muff20 in reply to Melba1

That's good. I use theoloz during the day and hylo forte at night. Using the moisture drops all the time has definitely stopped the inflammation.😁

CecilyParsley profile image

Bless you they look so very sore. I have to agree with everyone here please go to the eye hospital and get checked out. Your eyes are precious and it is not a waste of time. If they can give you some advice and help ease the discomfort. Good luck xx

Melba1 profile image
Melba1 in reply to CecilyParsley

Thank you - I went yesterday and got some treatment. They were very good and my eyes are less sore! X

CecilyParsley profile image
CecilyParsley in reply to Melba1

Great news xx

Olderkitten profile image

Hi Melba, looks like dry eyes which is common with lupus and age. Also if you take hydroxychlorquine you must get your eyes checked twice a year or more depending on severity. I'm using xiidra eye drops twice a day and it helps. I hope this helps.

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