The Australian Sjögren's Syndrome Association
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Punctuate Epithelial Erosions

Last Thursday morning I woke at 4am with an extremely painful eye. I figured I must have had a foreign body in there. I promptly fell back to sleep but as soon as I awoke, at about 9a,m I felt the exquisitely painful eye again. My husband and I used my saline drops to flush the eye (over and over again) but with no improvement at all.

Ended up in the A&E, (Accident & Emergency Department) where they did all the necessary eye tests. Conclusion was, erosions of the epithelial cells of the cornea over almost the entire surface of thr right eye. They recommended I went to the Eye and Ear Hospital in Melbourne for further testing and treatment. This we did.

By the time we got there i was unable to open either eye, so had to be led along like a blind person. The only reprieve was when they inserted anaesthetic drops. What blessed relief....for all of six minutes.

Discussion was had as to whether this was due to Sjögren's dryness. They were sceptical as they felt that I had no warning signs at 1am when I went to sleep, yet by 4 am corneal erosion was in full swing. They felt that an 'event' such as a chemical spray or a foreign body must have happened the day before which I denied as I had no knowledge of such an event occuring.

Well it's now Tuesday and my right eye is currently partially opened. Pain on touch or blinking has eased. Have been wearing an eye patch and dark glasses inside and out as light causes pain to shoot through the eye. My sight is very blurry. This is the first time I have been able to write on the computer.

I'll never be blasé wiith dry eye again, that's for sure.

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Ouch. What a shock for you. I will take your experience on board as a warning not to forget the gel I use at night and the drops by day. Hope you will recover fully soon.

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Yes annodomini do!

I had the low down with the Ophthalmologist this afternoon and she said I definitely need to use a gel based lubricant before bed.

My eye is improving - less pain and now the eye is 50% open, but my sight has a way to go. Have to go back in another week for review.

Meanwhile I will amend my ways. My husband was witness to the conversation so will keep me honest, hopefully.

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Oh so sorry to here your story and painful experience. Take care and heal. Without a dopubt gel...

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That was a scary experience , i hope your eye settles down again soon . Take care snd best wishes xx

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Ouch poor you. Oddly enough I had this exact experience when in my early 30s. In my case I hadn’t yet been diagnosed with autoimmunity and it was suspected to be viral in origin. It took about a week to resolve and I was given lacrilube and drops to use and no one ever referred to it again. After that I had a few years of severe rhinitis.

I do use my drops and gel all the time although less so since having punctal plugs a month or so ago. No sign of any permanent damage now so fingers crossed for yours healing up well too.

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Thanks Twitchytoes! Hmm, I wonder whether I should raise the possibility of punctal plugs with the Ophthalmologist next week when I see her again.

What's your theory as to why you got severe rhinitis after your episode of corneal erosions? Co-incidence?

It has been an awful week for me. Just over a week ago I was diagnosed with bladder cancer, then the next morning this happened with my eye. Tonight I read that one theory proposed is that rapid eye movements could cause 'stripping of the epithelial layer from the cornea in susceptible individuals'. I wonder about the timing for me being just after receiving the bladder cancer news. Could my REM's have been working overtime that night?

Anyway the good news after seeing the Urology surgeon yesterday is that urine cytology testing has shown no malignant cells just 'transitional' cells. However I am scheduled for surgery next Tuesday. I am so thankful it was found when it was, as an incidental finding really, while investigating gut pain.

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Oh no you poor thing!

I’m afraid I don’t know enough about the eyes or sleep patterns but I would have thought that stress might well account for an inflammatory response in your eye - and Sjögren’s would account for the corneal abrasions - especially if you haven’t been using gel at night. My optician explained that severe Sicca is often asymptomatic so this is why we must be guided by the disease protocol rather than Sicca making itself felt. I have no corneal abrasions but often feel my eyes to be excessively dry. I think in my case that it’s the neuropathy around my eyes making me feel this way.

So I’m over reacting to dryness where you are under reacting perhaps?

My suspicion is that many of the unexplained symptoms I suffered from as a child and younger woman were related to my autoimmunity - from Sicca, severe dental problems despite excellent oral hygiene and alopecia aerate several times plus really awful eczema everywhere. Either Sjögren’s and Hypothyroidism were the inevitable outcome of autoimmunity or else my overly activated mast cells led me to Hypothyroidism and Sjögren’s - the chicken or the egg?

Thank goodness for the early detection of the bladder cancer and very best of luck with the op. Twitchy xx

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Hi Megan - so sorry to hear about the discomfort you've been through with your eyes - I hope things are improving in that regard. I was very interested in your last post to Dr. Charmichael re gastric problems and (GES). I have come to feeling quite a bit of discomfort at the moment and don't know what to do. I feel like there's a blockage either in my stomach or liver but my immunologist is away sick. Naturally I will be contacting my GP. Since I've come online (although I realise your in Melbourne) I've been hoping to make enquiries and new contacts about medicos who are notably experienced with sjrogen's in this field where it comes to metabolism. I don't know still whether your up to reading this email but hope to hear from you when you're feeling better. Annie

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Hello Anne,

Sorry to hear that you are having GI issues possibly associated with Sjögren's S.

In the early days of becoming ill - 2007 'til I received a definite diagnosis of S.S. in 2015 (when I finally became seropositive), I had to deal with each 'symptom' as it arose, with the specialist most likely to address the particular concern.

So when I had neurological symptoms I saw a neurologist. Sore joints and muscles I saw a rheumatologist. GI issues I consulted a gastroenterologist. An ophthalmologist for eye problems. Lung problems, a pulmonologist.

Naturally at that time (2007/2008) I was quite confused, as I felt I was being assaulted with numerous individual symptoms/diagnoses, yet underneath it all I felt they were all connected because of their timing of onset being within months of each other.

At least I started to get good treatment/management for most of the worst of my individual problems which made life tolerable, such as Lyrica and Tramadol for neurological problems and 'fibrolyalgia'. Motilium and a liquid-only diet for gastroparesis etc, etc.

Perhaps even though your immunologist is unavailable at the present time, you may need to see a gastroenterologist or a hepatologist in the meantime.

I have been incredibly fortunate in that most of the doctors I have seen have been either associate professors or professors. Somehow, although they may not have been Sjögren's 'specialists they have been capable of expanding their understanding of what they are seeing in front of them to take in a broader picture. In fact it was my pulmonologist at The Alfred hospital in Melbourne who said to me two years ago, "I am seeing an autoimmune picture here". That was enough to send me to my GP to ask to have autoimmune testing done. That is when I was finally found to be seropositive for S.S.

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Sorry Anna-bell not Anne!

Megan

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Megansheart Commiserations with your awful experience. Our eyes are so precious! Might I suggest trying organic cold pressed hexane free castor oil dropped into your eyes. I have been using for several months and my eyes are so so so much better! This natural, extremely cheap remedy in my humble opinion leaves OTC and prescription eye drops for dead!

In the unfortunate event that you may have an allergy to castor oil, you could test a little bit in the crook of your arm or wherever you usually test for allergies. Then if all is well, maybe you could try one night on your eyelids.

Then if all be well, before you go to bed you could drop into eyes using an eye dropper or I simply apply one large drop to my eyelashes and quite a bit manages to get into eyes at the same time, I blink several times to help it in, it won't matter if your vision blurs because you will be going off to noddy land. My eyes are 100% less dry, for a fraction of the cost of expensive eye drops, which also contain lots of preservatives and other undesirable ingredients. Castor oil has powerful anti inflammatory and antifungal properties. Added bonus: long, lush healthy eyelashes!

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Thank you Psychodelia, I will try and remember to get a bottle of organic castor oil next time I'm near my local health food store!

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