I've had Limited Scleroderma for about 12 years. A year ago, I noticed that the vision in my left eye had become blurred. 3 opticians and 4 opthalmologists later (because I never see the same person twice, and every one starts at the beginning - what a ludicrous system), we have finally reached the conclusion that damage to the cornea is causing ghosting. I've been referred to a corneal specialist, and I expect to be waiting a long time to get this resolved.
In the meantime, driving is becoming more difficult, especially at night, when I see every headlight, streetlight and raindrop in triplicate. I'm considering whether to wear a patch over that eye to drive.
I don't have a Sjrogen's diagnosis, but all of the specialists I've seen have said that my eyes are very dry, which I know is a phenomenon related to Scleroderma. When I ask if the dryness could have caused the damage, I'm told - rather vaguely - that it's possible.
I wonder if anyone else has had this kind of issue, and if so have you been able to get it corrected?
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Lausanjuk
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Sorry to hear you are having this difficulty. Apparently Omega 3 fish oil supplements are really helpful for dry eyes. You need a high purity one high in DHA and EPA. Hope this helps.
I am sorry to read your experience and can I suggest you find another Optician, one that does NHS referrals. Also perhaps a conversation with your GP or if you are under a specialist for your Scleroderma they can refer you to see a Rheumatologist to see if you have developed Sjogrens as a secondary condition. I have Sjogrens and when I was first diagnosed they carried out a Schirma test for dry eyes. Even popping into Boots or Spec Savers they sell drops for dry eyes called Hycosan.
I hope you find someone who is sympathetic to your symptoms as there is plenty of help for people suffering from dry eyes and your sight is the most precious thing.
Thank you, Sylvie. I'm visiting my opticians again on Wednesday (but a different individual), and I'll be pushing for a referral to see if I can get a formal diagnosis. I already use Hycosan drops, warm eye pads, a blink reminder on my phone and pc, eyelid wipes and a paraffin based night-time ointment, so I don't know what else I can do to self-treat! Fingers crossed...
Oh great, and yes you are doing all you can. You deserve some help as your eyes are precious. If they don't then your GP should write to a Consultant that deals with Sjogren's and then they can carry out all the tests. Im sure you will get somewhere, stand firm and good luck.
Firstly Sjogren’s is always a full blown systemic autoimmune disease in its own right rather than primary or secondary or just dry eyes and mouth. So it would cause other symptoms too.
But as you have SSc already and this has started after then a) it’s hard to tell as symptoms can overlap and b) scleroderma can cause fibrotic changes in the mucosal glands which can in turn cause severe sicca syndrome affecting eyes and/or mouth.
So yes dry eye disease can and does cause real damage - especially if it starts before you’re aware of it and treating. I have friends with RA and severe sicca (which they used to call secondary Sjogren’s but things are changing - now referred to as “associated” ie associated Lupus/ RA/ Sjogren’s - depending on which came first or which is more severe) that has caused corneal erosions. But I also have friends with “primary” Sjogrens who have other serious glandular or nervous system issues but eyes and mouth are just quite dry and not a huge problem. You might have both SSc and SS as of same family and autoimmune diseases do tend to come along in clusters.
Are you on any disease modifying treatments yet for your systemic sclerosis? There are immunesuppressant eye drops for severe dry eye with local inflammation - as yours sounds like it is. If you’ve tried all the obvious preservative free eye drops and ointments and follow a blepharitis regime with heated eye mask but still getting damage to eye surfaces then are also serum drops made out of human plasma.
I am on Mycophenolate now having been diagnosed with seronegative Sjogren’s by lip biopsy 7 years ago - previously been diagnosed with RA/ inflammatory arthritis when my sicca symptoms started. All arrived together suddenly with Raynaud’s 12 years ago. I’ve never had damage to eyes or mouth from Sjogren’s thankfully but have long used Hyloforte drops and various eye ointments, have 6 year old punctal plugs still in place and get reviewed annually by an eye consultant. Saw him yesterday he says my eyes have never been better despite early stage cataracts. He credits Mycophenolate for this as eyes were much more inflamed before I started it 4 years ago. Dentist also happy with my teeth apart from receding gums - which I believe is more related to my more recently confirmed systemic sclerosis.
So it maybe Sjogrens or it maybe SSc related sicca - with you but either way it sits under rheumatology and only they can diagnose and treat you systemically. I do hope you have a good rheumy who knows enough about scleroderma and sjogrens?
Thank you so much for your reply. It's useful to know that corneal erosion due to dry eyes is a possibility. I have indeed been doing all the usual things since I realised the dryness might be causing damage but it makes no difference to my vision (which makes sense if the cornea is already damaged).
The opthalmologists I've seen haven't checked for sjogrens; my rheumatologist has only asked to be kept informed and I'm only seeing him every 6 months currently even though he wants to see me every 8-12 weeks (NHS backlog I assume). I'm wondering if I should just go to the GP and ask to be tested. If I'm 'officially' diagnosed with a dry eye condition then at least I can hope to see an eye consultant regularly, as you are, and avoid further deterioration. Your positive experience with mycophenolate gives me cause for some optimism too!
Dry eye of Sjögren’s can definitely cause severe corneal erosion for some people. It is easily tested by a high street optician who can also refer you to an ophthalmologist. That’s how it happened for me at least.
With Sjögren’s it’s usually 3 types of dry eye disease I’ve been told. I can’t recall the medical names but basically one type is lack of protective layers of tear film (mucin) across the eye surface, another is poor tear production due to dryness inflaming the tear ducts and third type is inflammation in your meibomiam glands - otherwise known as blepharitis. The latter you can treat by heated eye mask daily for 15-20 mins - which must be hot enough to melt the clogged up glands and release the oil which in turn lubricates the tear ducts and keeps things working - like 3-in-1 oil!
As you already have SSc it shouldn’t be hard to get diagnosed with Sjögren’s. I wouldn’t bother with GP as they haven’t got the tools or expertise to diagnose. Just go to optician and ask for dry eye tests with drop of yellow dye in eye and lights off they test your blink and see how well the tears break up across the eye surface. It’s very much an optometrist’s bag. If they think your dry eye tarries with Sjögren’s they will hopefully refer you to your local eye clinic. This way your rheumatologist should be able to diagnose you and ophthalmologist can decide on best treatments to prevent more damage. Best of luck 😊
It seems like your experience of opticians and my experience are quite different! Out of the three I've seen in the last 12 months (ranging from basic high street to expensive independent) they've all identified dry eyes. I've had the yellow drop test which confirmed unstable tear film; I've had a more comprehensive test which identified lipid and aqueous deficiencies. I've explained every time that I have SSc which is associated with Sjogrens, and that it might be a symptom of the latter. And yet they've just agreed with me that it could be a symptom and / or tried to sell me expensive treatments.
I'm going for an annual eye test next week, so I think I'll push to have a referral specifically for dry eyes / Sjogrens. You're right - going through the GP will only add an extra delay.
Well to be fair I did see one for a few years who was recommended to me as having special interest in Sjögren’s due to his wife having it with MCTD. He was the one who explained to me about the 3 kinds of dry eye disease. He’d studied dry eye disease at PhD level. He referred me for punctal plugs although I already had diagnosis of Sjögren’s by lip biopsy.
Unfortunately he retired and I ended up at local Specsavers - who sound more like yours. That said it’s patchy with some opticians much better than others and I have needed strong varifocals for many years so have regular check ups. What they say is pretty much same as what my opthamologist says ie eyes much less inflammed now I’m on Mycophenolate - “keep doing what you’re doing - it’s clearly working”
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Dry eyes worse at night
Dry eyes and cataract operation 
Swallowing problems
Scleroderma & Raynaud's
Twisting and it's nothing to do with Chubby Checker. 
