Severely dry eyes and awful light sensitivity

[NikkyO]

Hi All, am new here, having just been diagnosed with SS. Just wondered if there's anyone here with dry/light sensitive eyes as their worst symptom. Mine is so bad I can no longer work outside my home. Even posting this message is a nightmare as my eyes are screaming at me to stop 😖....just wondered how everyone else copes with this and which eye drops are best to use. I currently use hycosan extra, some days several times an hour to try to get relief. I live in the UK by the way.

[Devon40]

There are so many different drops, gels, ointments, etc. Different people react to different makes. I suggest you sign on to TheSmartPatientsTeam, a Sjogren's Syndrome blog in the US. It's a very active site with all kinds of suggestions. Members are from all over the world and help everyone. I'm from the UK too, Devon, but I'm living in LA, California. Hope you get some useful help. Take care.

[NikkyO in reply to Devon40]

Thanks a lot for the info Devon40, will check it out 😁

[leapingmonkey]

I’m now using Optive + eye drops & Ikervis Ciclosporin drops, prescribed by a specialist. It helps keep it under control. My blood tests for SS all normal. I have EDS & ‘some form of inflammatory arthritis’ (still waiting dx)

[NikkyO in reply to leapingmonkey]

Thanks for the info leaping monkey. I've tried a few different brands of eye drops but keep going back to the hycosan extra which is what my optician recommended. They work ok for me on good days but just don't cut it on bad days. It was my gp that diagnosed me with SS after my blood test came back positive for SS markers. I'm now waiting to see a rheumatologist, happy days! 😁

[Billychloe]

Hi NikkyO I have had SS quite a few years have the same problem. Can’t go anywhere without my sun glasses. Have found that the eye gels are much better than the drops. Hope this helps a little😘

[NikkyO in reply to Billychloe]

Hi Billychloe, which gel do you use? I've tried the hycosan gel for night time but it didn't seem to relieve the dryness as much as the drops. I guess it's very much each to her own in the SS game! 😖 Thanks for tip, will look at more gels 😘

[bambino4]

Hi Nicky....with out a doubt Hi Lo Forte eye drops are the best...they actually stay in your eyes without runnong down your face! I use them about 4 to 5 times a day

[NikkyO in reply to bambino4]

Hi Bambino4, thanks for your reply. I checked out Hylo Forte drops, turns out they are exactly the same as the Hycosan extra, even made by the same company, which is rather strange! But both are their strongest drops for severe dry eyes. I'm actually wondering if I need some anti inflammatory drops as well at the mo, but haven't seen the specialist yet.

[Wellywelly427]

Yes the drops over the counter are like ice cold. The pain in my eyes from the sun really hurts it's way too bright. I try to do everything at night

[Georgiab123 in reply to Wellywelly427]

I think we are all the same, summer is terrible stinging eyes I use eye drops all day then ointment in for bedtime works ok , need sunglasses all the time outside

[Wellywelly427]

Do you ever feel like pins poking you in the eye and you get a headache from your eyes hurting? I've told my doctor all my symptoms I've even lost all my teeth now I'm almost bald and he shrugs it off

[Georgiab123 in reply to Wellywelly427]

My teeth to are chipping off the dentist keeps capping them but it dsnt last long

[NikkyO in reply to Wellywelly427]

Yeah, I do get eye related headaches and migraines all the time and so spend much of the time wearing sunglasses inside as well as outside and particularly if I'm driving even if it's not sunny as it is still too bright for me 😖

[Littlemisssunshine87]

Hi Nikky, I’ve only just been diagnosed as well after being unwell for 4 years. Light sensitivity is def one my worst symptoms. My eyes always feel some sort of discomfort that go into pain, it def triggers migraines in me. I also can no longer work due to this symptom it’s that severe. I type this to you in sunglasses with my screen light as low as possible. I use hyloforte eye drops, on super bad flares tho it just doesn’t touch it after using all day! Feel your pain for sure. I have been told I have gland dysfunction in my eyes due to the SS. I was given antibiotics but no help and I go back to eye hospital next month. Also just started on hydroxychloroquine a few weeks ago but my rheum can’t even say what symptoms (if any) it will help with. Just have to wait and see. The light sensitivity is awful I wouldn’t wish it on anyone, stops me from being able to go places. I’m in the U.K. as well.

[NikkyO in reply to Littlemisssunshine87]

Hi littlemisssunshine87,

It's a nightmare isn't it, like you say, wouldn't wish it on anyone. I've now got my GP referral appointment it's in September at Salford Royal hospital, just hope I get to see a helpful rheumatologist. If you don't mind me asking, which hospital do you go to? Haven't been to Salford before. Seems to have good reviews though.

[Littlemisssunshine87 in reply to NikkyO]

I see Dr Parker at the Kellgren Centre of Rhuematology in Manchester Infirmary. This is my second referral as my first one to my local rheumatologist in Bolton I saw a very unhelpful consultant who quite frankly didn’t have a clue about the complexity of these diseases. She dismissed all my tests results, poked me a bit and diagnosed me with fibromyalgia. Thankfully have a good GP who also didn’t agree with her and wanted me to have a second opinion. I did my own research and wanted to go to the kellgren centre and I’m so glad I did. I was part of a research study last week and my consultant mentioned an upcoming clinical trial that may be beneficial. He had some SS patients who don’t even present with dry eye and mouth. Knows how progressive and complex it is and not one size fits all. Did your GP diagnose you? X

[NikkyO in reply to Littlemisssunshine87]

Yes she did, after my blood tests came back. She just said that my results along with my symptoms indicated SS. Actually, it was my optician who originally said to me to go and see my GP as he suspected SS due to the severity of my dry eyes. Guess what??...I think we might live quite near to each other, I live in Bury! The clinical trials at your rheumatology department sounds interesting, are they trialling a new medication?

[Littlemisssunshine87 in reply to NikkyO]

Ohhh we’re neighbours haha how crazy! Yeah my GP was the same, after years of ‘I don’t knows’ Finally did the right blood tests and she had a light bulb moment, very lucky to have supportive drs. I hope you have better luck with your consultants at Salford than I did at Bolton.

He didn’t go into it fully as it’s a few months off being finalised he just said there’s one upcoming that may be suited to me. If it’s a medication for light sensitivity I’m all in!!! In the meantime I just live in sunglasses, they don’t stop it completely but they take the edge off. Blue light is the worst for me. Really doesn’t help that LED’s are everywhere now, they are awful. Think I was born too late, give me candle light any day. Feel free to PM me and we can chat some more 🤗 x

[NikkyO in reply to Littlemisssunshine87]

Thanks littlemisssunshine87, will do x

[Sekka in reply to Littlemisssunshine87]

Interesting indeed! I can't stand overhead lights especially if they are fluro and I only use side lamps at home.

What a unique club we belong to from both ends of the planet!

[Littlemisssunshine87 in reply to Sekka]

Same with the lamps at home, I like to get 3 stage touch lamps with a shade and have it on the lowest setting and then we just have candles on, it makes it super cosy anyway 🤗 I’ve stocked up on halogen bulbs although any bright light can cause me problems. I took the bulb out my new fridge last week as that was making me feel unwell, why does everywhere insist on blue lights these days, terrible for health and environment and they’re ugly!

[Sekka in reply to Littlemisssunshine87]

Yep!! 🤣

[lupieibbie]

I know everyone reacts differently but earlier this year I had punctal plugs inserted after years of very dry, red veined eyes. The transformation was almost instant. I now use hylo forte infrequently but still use Xailin preservative free eye gel at night. This gel was recommended by my optician whose husband is an Opthalmologist.

Maybe worth looking into/asking for a referral to Opthalmology?

Hope you get some relief soon as I know how uncomfortable it can be.

[NikkyO in reply to lupieibbie]

Thanks for the info lupieibbie. My optician has mentioned them to me as an option, can you feel them in your eyes? And is it a painful procedure?

[lupieibbie]

No you can't feel them at all.

No, I didn't think it was painful. They use an anaesthetic first which is the same sensation as getting bloods taken ("sharp scratch" is the expression most nurses/phlelebotomists use) which, after all the blood tests I've had, I'm pretty numb to.

The first set fell out after about 3 months but they were struggling to get the right size from their stock at that appointment. When I got the current ones, they suggested these ones were the ferrari version of punctal plugs with caps to prevent them falling out. I must say they do feel/look pretty secure.

Cauterisation is a further, and permanent, option but they (Ophthalmology) like to try the plugs first to assess whether you'll benefit from them.

From my experience, it's been so much better in that my eyes no longer sting and look permanently red veined like I've been up all night partying! If only!

I still have some light sensitivity but not as bad as pre-plugs when my eyes were so so dry.

Good luck finding a solution that's best for you.

[NikkyO in reply to lupieibbie]

Yes, my eyes are permanently red veined too, looks like I've been crying buckets!! 😭 Would I get referred to an opthalmologist from my GP or rheumatologist? Sorry for all the questions, but I'm new to all this malarkey! 😁

[lupieibbie in reply to NikkyO]

My optician referred me but your Rheumatologist is also a possible referral route. I'd say GP too but that might be less effective in Opthalmology seeing you quicker as the first have more eye specific experience. That may be wrong but, in my experience, the GPs in my practice made me try every gel/liquid invented over a prolonged period and never once mentioned that plugs were an option.

Don't apologise ..... ask as many questions as you need to. That's the beauty of sites like this, somebody's generally 'been there' before you 😀

[NikkyO in reply to lupieibbie]

Thanks lupieibbie for the much needed info 😁

[Sekka]

I also have severe dry eyes and use eye drops about every 2hrs plus a gel one when needed. Also use eye ointment at night. Glare is a problem. I wear sunglasses outside always and if I'm inside somewhere with fluorescent lights I try to sit with my back to it or just apologise to people and wear light clip on sunnies over my glasses.

I'm in Australia.

[NikkyO in reply to Sekka]

Hi Sekka, yeah I do the same, my family are well used to the performance we have to go through if I'm with them when we're out for a meal somewhere! I have to make sure before we all settle down that I'm furthest away from lights and windows, sometimes having to move to another table or switch places with someone, think I secretly drive them all potty!! 🙄😂

[Sekka]

So good to know we are not alone isn't it!? Thankyou for your supportive reply. This site is great.

[NikkyO in reply to Sekka]

Yes it is 😁, makes us feel not quite so alone in this hidious illness, and yes it is a good site, I've learned a lot from everyone already and I only joined last month! Xx

[Aquamarine88]

Hey i agree with everyone thats commented - one thing not mentioned is the tiniest dab of virgin coconut on the cheekbone under your eyes (plus of coures the Hylo forte in your eyes) it seems to help me with the aching. woth a try just dont get it in your eyes !!

[NikkyO in reply to Aquamarine88]

Thanks for Aquamarine88, haven't heard of that one so far, so will try it! I do use the Hycosan Extra eye drops which are identical to the Hylo Forte and that helps enormously, don't know what I'd do without it quite frankly.

Thanks everyone for your help and comments 😘

[Aquamarine88]

interested to see what you think, i find it so hard to remember and on a day at home sometimes i forget the drops till my eyes hurt

[NikkyO]

Hi Bodziu, haven't heard of that therapy before. It sounds painful for someone to have to go through with extreme light sensitivity! I a also have lots of floaters anyway, they do get in the way don't they! I have an eye hospital appointment tomorrow so will get to find out which parts of my eyes aren't working properly, hopefully.

Thanks for your reply xx

[bambino4]

Hi Nikky...I really feel for you as I have battled for years with extremely dry eyes/used to cry with pain and couldn't manage my daily living...until an Opthamologist put me onto Hi Lo forte drops...the be set thing ever. I put about 10 to 15 drops a day into my eyes religiously and finally I no longer have eye pain....I think u can get them in the UK...I am in Australia though 🙂

[NikkyO in reply to bambino4]

Hi Bambino4, yes I too use hyloforte (I get it on prescription now), and need to use it on an hourly basis now to try to keep my eyes as comfortable as possible. I'm not able to tolerate any other drops than hyloforte, I'm soo thankful for them! We all seem to have similar nightmare stories don't we.

Thanks for replying xx

[Froogleme]

Hi - I've had SS for over 40 years. For each of us it's different. But the big change for me was when I had punctal blocks inserted. I use Hypromellose eye drops on prescription - 3% seems to work best, 1% was to viscous. I also have my glasses made light reactive to the extent that they are almost always showing a slight tint, and they are also have an anti-glare coating. The latter was expensive but worth every penny. All of this means (for me at least) that I have been able to continue my work as a website designer even though I'm nearly 70. Don't give up - you will find a way through!

[NikkyO in reply to Froogleme]

Hi froogleme, thanks for your encouraging post, I'm really impressed that you manage to do your website design work, I'm really limited with anything to do with a screen, it just hurts and fatigues my eyes so much. I too have just had punctal plugs fitted, they do seem to be helping a bit, that's if they're still in there, I keep forgetting and rubbing my eyes! 🙄 Xx

[Froogleme in reply to NikkyO]

Don't worry, I'm always rubbing my eyes but I've never dislodged the plugs. I do find that I need to make a habit, when sitting in front of my computer for hours, of regularly wriggling around ( to help back pain) and doing some rapid blinking. Fortunately I work from home and don't share an office! I'm also blessed with a view from the window next to me of a beautiful Scottish loch, so my eyes get their (close-up then distance zooming exercises) and I don't miss anything that's going on our there! Apparently we blink less when viewing a computer screen than when reading or viewing TV.

[NikkyO in reply to Froogleme]

Wow! A view of a Scottish Loch from your window...I'm soo jealous!! Sounds lovely. I will be having a follow up appointment at the eye hospital in a few weeks, so hopefully, like you say, I won't have dislodged or lost the plugs! 😁