Do I have Sjogren's?

[Trish53]

For the last few months I have been having increasing problems with my eyes in that they (and the surrounding skin) feel really dry and uncomfortable. So much so that I keep blinking excessively, which makes me look like I've got a nervous twitch but seems to make it worse. Conversely I can't seem to keep eye makeup on at all. It keeps smudging under my eyes as if I've been crying or something (I used to love wearing makeup!). I have tried all the dry eye drops and sprays from the chemist but they don't seem to help and the problem gets worse if I'm tired or stressed. Does anyone know if something more effective can be prescribed?

[sarahwhitk]

Hi, I too have been having issues with my eyes.

I went to see an optician who said i needed glasses due to right eye deteriorating and I have 'poor quality tears' (dry eye) he suggested eye drops called 'Systane' which are lubricating and cost £6.99

He did say is not uncommon to have eye problems with RA, the glasses and drops are helping but I am still getting some eye pain and blurred vision.

I am going to mention it to my RA nurse when I see her in few weeks as I am worried about going blind...I would suggest you see an optician for advise.

Hope this helps x

[Trish53]

Thanks Sarahwhitk, I've not tried those ones, so I'll give them a go tomorrow. I too get eye pain and some blurred vision, but my optician didn't make any comment when I had my last eye test. Mind you they weren't this bad 3 months ago! I don't have any upcoming RA nurse appointments, so maybe I'll give her a call. although I feel a bit of a whingebag, as I seem to have one problem after another lately - especially with meds!

x

[Fussie]

Hi Trish, I think you should mention it, if I had those type of symptoms I would be concerned, especially as my mum has had a detacted retina, and now has problems seeing out of that eye. Your not a whingebag, you are quiet rightly concerned for your eyesight, Hope you get a supportive answer. xx

[samuffin]

Hello

I was seeing a chest specialist with dry cough, a vocal cord advisor re husky voice and loss of voice periodically, dentist re loss of enamel on front teeth and dry eyes. All added up to Sjogrens. I found the best answer was a humidifier plus large leafed plants in the house. I keep an eye on the humidity and if I think it is below what my body prefers on goes the humidifier. It makes a huge difference and also helps with the dry skin.

[artyone]

Hi I was at optition yesterday, he says I have dry eye to tell my specialist.get some drops. He said a good thing to do is warm flannel place under bottom eyelid at night it stimulates the tear duct to open.

hope that helps i have ra he said it is linked i have pos lupus too

[Treesha]

Hi there I have Sjogrens and RA and work in an opticians, there's not much to help with dry eyes except for drops or gels. Some gels can leave you blurred for a couple of minutes after use. Some clinicians suggest evening primrose or fish oli capsules (which i find helps) i wear makeup too and so only use eyesprays at night as i find if the skin around the eyes is too moisturised make up can dissolve. As above humidifier is excellent, i rarely use central heating and always sleep with the window open on the catch. Xx

[Victoria-NRAS Partner Moderator NRAS]

Hi Trish

It might be worth contacting the British Sjogren's Syndrome Association (BSSA) for more information. They also have information on their website:

bssa.uk.net/information.html

I hope you find some help on there.

Kind regards

Victoria

(NRAS Helpline)

[Tillytop]

Hello,

I have RA and Sjogrens and have been having probs with very dry eyes for several years now. I now see an eye specialist and, having tried most of the available eye drops, I now use "Hylo Forte" drops and Lacrilube ointment - both of which are, I think available over the counter, although mine are prescribed for me. Drops like Visco-tears, Optive, and Hylo Forte are thicker than the normal Optrex type drops, so potentially they have a longer lasting effect. The eye specialist tells me that the Lacrilube ointment is likely to be most effective, because it is so thick, but if, like me, you need to use it every few minutes, you will find that the downside is that you can't see for much of the time!

I really would ask your GP or rheumatologist for a referral to an eye specialist though because vision is too important to mess with. Apart from being very uncomfortable, dry eyes can also cause scratching of the eye surface and potentially scarring of the front of the eye.

If your dry eyes are severe, an eye consultant can plug your tearducts for you - either with temporary punctal plugs (which do tend, in my experience, to fall out very quickly) or through surgery to cauterise the tear ducts permanently.

Really hope you find something which helps you.

Tilly

[Trish53]

Thank you all for such helpful advice! I have been trying Systane today (suggested by Sarah above) and found them better than all the ones I've previously tried, but I'm also going to follow up on all other suggestions too, as it's causing me real problems at work, as I'm looking at a computer screen all day, which makes it worse!

Trish x

[Carol3]

Hi folks, sound very familiar to me. Had Sjrogrens syndrome since 1991. Sent initially by my dentist as my teeth were crumbling/ wearing bottom teethe. they did tests which then diagnosed it, A blood test would be another way then they do mouth and eye test- for saliva and tears. Saying that after years of using drops for artificial tears it did help, but eventual now use drops that are for daily use: " celluvisc" are about the best

.All the sprays for the mouth and pastels do help. Look out for local support groups too, someone to share your experiences with and a cup of tea.,helps, also a talk with specialist, monthly news letter etc. Its all about managing and knowing your limits. It took me a while to get my head round it all, with regular visits to hospitals but being informed does help. I had the tear plugs in and then the op to cortourize tear ducts which did help allot. But my tear ducts healed and returned to as they were before. so for me it worked but then it didn't. At least I tried it. You can buy a book from Amazon about S.S .

All the best xxx C

[Hidden]

I wear contact lens and use allergen drops throughout the day. My optician recommended Allergan Lacri-Lube ointment for the night time, you just need a little drop of it and it does make the eye moist during the night. I obviously go to my opticians every year for a check up, and last time found that my eyes had improved! I am also working with computers regularly so I have started to wear my glasses for that too.

I also find avoiding smoky places and airconditioning helps A LOT! Good luck xx