Sjögrens Syndrome

[Dryeyegal]

Does anyone else have Sjogrens Syndrome with severe dry eye?

[Al10]

And the rest!! It's a bit rubbish isn't it? Hi, Dryeyegal.

Do you use a hot compress regularly? I have one from the opticians. A hot flannel works too but cools quick. I find it is getting the balance of using it enough to keep my eyes comfortable but not so much it makes the skin sore. A hard balance!

Someone just said to take fish oils. I haven't for ages so that is something to try.

Thealoz duo (preservative free, 10ml bottle) eye drops help me. (I've tried loads) There is the individual dose gel for night time too. Look them up. The pharmacies dont all hold this one (I had to change to having my prescriptions on line and delivered to get these because my local chemist couldn't get them.) and initially they tended to mess up between the normal drops for daytime and the thicker gel for night. It took me ages to sort it out with both the GP and the pharmacy confused, but worth it because for me it is the gentlest drops esp the day drops.

I've mentioned this by name because the GP's wont necessarily know them and will prescribe cheaper ones often with preservative and if you have severe dry eye then you cant have preservative no matter how hard they argue that you can!

I'm allergic to lanolin (guess who forgot to read the label?) and sensitive to alsorts and so the usual treatments they recommend, have been awful for me making my eyes and eyelids terribly sore.

Dunno if any of this helps. Sadly, it seems really hard to get any help or advice these days from the NHS. Don't know if they are reluctant because good eye drops are so expensive or they just dont have the answers. Think Sjogrens is poorly understood by most GPs and even the specialists don't have the answers yet. It is useful to google the condition. There are some good sites that are written by Drs who are sufferers too.

There is a great online shop that sells and describes all the eye drops. Very handy for reading ingredients and reviews. You can probably find it by googling. We are all different and what suits one wont always suit another.

[Optimystic]

I have very dry eyes - confirmed by my optician - but for some reason my GP isn't interested in actually considering that I might have Sjogren's. My mouth and nose tend to be dry too. I use Systane preservative eye drops and a wheat bag eye mask that's very soothing when it's warmed, plus Blephasol lotion on my eyelids which I find soothing too. When I couldn't get hold of preservative free eye drops, I tried normal ones and they stung like anything. I tried the gel to use at night but couldn't get on with it, but I've been so bad lately that I may try again. I've noticed that when I have a fibro flare my eyes are much worse! The itchiness in the eyes can be unbearable and sometimes I just can't help rubbing them. Sometimes I almost feel that I could scratch my eyes out! This result is my eyes 'bagging' which takes ages to go down and in fact now I'm older (I'm late 50s now) it can take days. One day I suspect my eye bags won't ever go down again! Oh well...

[Chance15 in reply to Optimystic]

Hi there I av the same problem and mouth I cud av a drink any drink and within 2 minutes my mouth wud b dry as a bone.Somtimes it wud be hard for me to talk. I also get sore gritty eyes that also become itchy.Problem after problem but wat can we do.

[KBM0g3r]

Yes, I do along with fibro. It's a genetically inherited condition unfortunately. I'm just at the early stages but was given some drops for my eyes which really help.