Severely dry eyes

[Rain134]

Hi I’m hoping for advice from sjorgrens sufferers. My eyes are severely dry - scored 2 in the schirmer test in both eyes 4 years ago. They feel worse now, I struggle to sleep as they feel so dry.
rheumatology discharged me at the time without diagnosis, opticians only advise hycosan extra, which doesn’t help as much now they feel even drier.
What does everyone else use to alleviate this? Thanks

I have had dry eyes for years. Tried every eye drop going. Eventually got referred to a consultant who prescribed Ciclosporin eyedrops which are a weak immunosuppressant and I have had a big improvement. Not 100% but maybe 80% improvement. Apparently some people are sensitive to these eye drops and they do sting a bit when you start them.

Pardon my ignorance but what do you mean by orbits? I'm just trying to glean info for my own dry irritated eyes!

Another vote for Ikervis if you have an airing competent. Had to start with private prescription (£100 a month!) but finally got on nhsz game changer

I’ve had two lots of laser eye surgery which left my eyes feeling like sandpaper. Viscotears for the win here. I buy these in bulk from Amazon.

I’m not sure if the OP has ever come back to this thread, but for anyone suffering from severe dry eye syndrome, please go to your optician and ask if they run a dry eye clinic. If not, Google to see if there is one in your area. They will run proper tests to pinpoint exactly what the problem is and prescribe a course of treatment. Eyedrops alone won’t cut it!

I tried all the drops, gels and masks. Nothing really worked, not for more than an hour anyway. In the end I went onto methotrexate. Now totally under control. Would just have drops if flying etc

A few years ago I saw an eye surgeon about having my shortsighted corrected. For various reasons we didn’t proceed. One of the reasons was that my eyes were very dry. He recommended I took Omega 3 oil, which I have done since. At my last contact lens check up, my optician commented on what a lovely tear film I have! So this is a far more long term, strategic approach, but try Omega 3 oil.

I have 2 x autoimmune arthritis. Though I do not have Sjögrens, I scored 0 on the Schirmer test for both eyes and I also have a dry mouth. It’s always worse in the summer.

I use a mixture of Theoloz Due and Hycosan Intense (red). The Hycosan ointment is also good and keeps your eyes moist a long time but putting it in has to be the very last thing you do before sleep because it’s impossible to see anything after it goes in.

It is so infuriating that just basic maintenance and functioning is such expensive hard work but at least we’re lucky enough to have the options these days

I have very dry eyes, the doctor at the eye A & E my optician referred me to said my corneas looked like corrugated cardboard, they were so painful I had to take painkillers. I was prescribed steroid drops for a month as well as artificial tears & a night time gel that I get on prescription permanently, my eyes are so sensitive now, I have to be so careful with eye creams & cosmetics.

Have you had punctual plugs fitted? Really helped me.

If you can, get a referral to ophmatology. They can prescribe cequa and the alternative and also do blespgaris treatments. The night ointment oddly does give much relief but I managed with Evo tears, hylo duel intense and opantanol drops. Never got on with cequa (burns) and have blepha clean wipes. Hot compress can also help

preservative free was a game changer for me.

I had the plugs and definitely worked but they fell out so not sure they are long lasting

I used viscotears. One factor is that hayfever tablets makes my eyes even more dry. I have eye drops everywhere..in my bag, beside my bed, near the sofa, in the car. It's just something I have to apply constantly to keep dryness at bay. When it's really bad nothing other than eye compress and lie down for a few hours.

I was just going to say this! If you're having any eye problems you can go to an optician (look up NHS list of which ones do it), free and at short notice. I've been a couple of times when having a flare up re Sjogrens. They do the same kind of examination that you'd get at the hospital, and can recommend stuff.

I actually went to the opticians a couple of weeks ago for a check up. They said my eyes were very severely dry, but just recommended hycosan still, but to up the number of times I use them.
My eyes have been so bad for the last year, I have to put drops in multiple times at night, as they are so uncomfortable. Far worse than when I had the schrimer test (and I only scored 2 then). I asked about a referral, but was told to up the hycosan instead.
Its such a nuisance and I don't know the cause.

I have an eye mask the optician in Specsavers recommended for my dry eyes on top of drops etc. I warm it in the microwave and then fall asleep with it on!

I have Sjogrens. Aside from the eye drops and gels mentioned and the microwaveable eye mask, also I take an Omega 3/6 eye supplement called Lacritec. I think this helps. I also have very dry nose and mouth, with inflamed salivary glands. So am on hydroxychloroquine too. Hard to say which of all the drugs is working!

Are you in peril? That was definitely the cause for me. Never had an issue until about 43.