Sjogrens anyone?

[Maggiet]

I've just been to the optician as I have had really sore gritty eyes for a few weeks. He says I'm not making enough tears and the normal time for a tear smear on the eyeball to last is about 16 seconds and mine is only lasting half that. He's given me a letter to take to my gp to get eye gel for through the night and drops to use during the day. Coincidentally, I'm seeing my rheumatologist on 14th Jan so can talk to her about it. I would appreciate any info from anyone who has similar problems.I haven't been diagnosed with Sjogrens at this stage. Thank you xx

[MaryF]

Hi there, yes I have Sjogrens, Systemic Lupus, Hughes Syndrome, Psoriatic Arthropathy and a slow thyroid... it sort of goes with the territory with autoimmune. There is also a good forum on here... For Sjogrens... I have found that my eyes improved quite considerably after totally cutting out gluten, a layer of irritation away! MaryF x

[Maggiet in reply to MaryF]

Hi Mary - we have spoken on the phone! I've been tested for loads of things and I am hypothyroid. I have small fibre neuropathy and fibromyalgia and I'm following a GF diet at the recommendation of the pain clinic. Not noticed lots of difference yet, but it's early days and as I've been poorly with the usual winter bugs my body hasn't appreciated the good food I've been eating!

[MaryF in reply to Maggiet]

Oh hi there, well keep me posted, and my best wishes to you. MaryF x

[MaryF in reply to Maggiet]

ps.. there is a light on upstairs and nobody in today with me! MaryF x

[Maggiet in reply to MaryF]

Ooh er. I bet someone put it on, drew back the curtains and then left the room and then the house. I've done it a few times!

[Hidden in reply to MaryF]

makes a change, the light on and Mary in? (PS burglars use torches) xx

[MaryF in reply to Hidden]

Yes...MaryF x

[alangardner in reply to Hidden]

would any burglar ever be so stupid to try burgling marys home ..... I think not --- especially if she was having one of her spats .....I for one would have to feel sorry for them .....yuk yuk .....alan xx

[Fruitandnutcase in reply to alangardner]

Ha, ha. Very funny. I can just picture Mary tracking them down and 'dealing ' with them.

[Fruitandnutcase]

I've got really dry eyes too, almost no tear break up time to speak of. I've got gel stuff that I can use at night and drops for day time.

Make sure you use your drops all through the day rather than just once or twice, that makes a huge difference. Sometimes I even keep mine in the fridge - those lovely cold drops in my hot, tired, itchy eyes - bliss. Go for drops that are free of additives if you can, much better.

I also often use a face cloth wrung out in hot water to make a compress and hold that over my eyes, that is very comforting and I have also in the past used my facial steamer - got it for my sinusitis and discovered it helped my eyes feel better too.

Funny, in the past, I sensed I had some sort of autoimmune disease and I had looked up lupus and Sjorgens but realised they weren't quite what I had - turned out I had a Graves. So I was sort of on the right track.

I agree with Mary about cutting out gluten - I am trying to be gluten free. Not always easy but easier for me as it is from choice not necessity.

Good luck, hope you get sorted out soon. Liz x

[Maggiet in reply to Fruitandnutcase]

Thank you for your reply and suggestions Liz - I'll certainly follow them up. My problem will be at work as I look at a computer screen all day, but I will use the drops regularly as you suggest. I keeping telling the docs that it's as if my body hates me, but I just get that funny look! I've kept to GF even over Christmas and made GF mince pies with pastry made from rice flour. They went down well even with the family! Was really tempted by sausage rolls and scotch eggs, though. At least wine is gluten free!

Thanks again for the tips. Maggie xx

[helvella Administrator in reply to Maggiet]

I had a fairly long period of dry eyes - largely resolved when hypothyroidism treated. Occasional "relapses" - sometimes seem related to my thyroid hormone levels; sometimes possibly not.)

I used Lacri-Lube overnight and ViscoTears about four times a day. All preservative-free. (Originally I had been using the ordinary drops available all over the place and gradually got worse. Am convinced that the preservative was causing that.) I use computer screens all the time - and they can be a problem. But when treatments are right, I am fine. Hope that applies for you too.

Rod

[Clutter in reply to helvella]

There are anti-static screens that can be overlaid on the pc screen that may help protect your eyes from dust being drawn to the screen.

[Maggiet in reply to Clutter]

Once I've seen my rheumatologist on the 14th to see if she knows what's going on (!) I'll speak to our health and safety officer for somehelp. Thank you for the tip x

[Fruitandnutcase in reply to Maggiet]

I keep eye drops in most of my pockets, during the day I use HycoSan - you can get them from an optician - not cheap but very good and after the first blink or two you can see quite easily with them in which is an added bonus. At night I use the gunky stuff.

I find in the car especially if I am a passenger for some reason or when using the computer my eyes dry out quite quickly, when I use the computer or even my Kindle or a book my eyes feel 'stiff' and sore, the car just seems to dry them out so if I am a passenger I just keep putting drops in, my tear break up time is about two to three seconds on a bad day and the surface of my eyes was getting nasty.

I have now got a thing called a pterygium which feels like having an eyelash or something stuck in the corner of my eye and it has pretty much come about from having dry eyes so keep putting the drops in

[Maggiet in reply to Fruitandnutcase]

Thank you for the info and tips. The optician has given me a letter to give to my GP to get the drops on prescription so I won't have to pay, but to be honest, I would pay just to get some relief!

[Clutter in reply to Maggiet]

There are anti-static screens that can be overlaid on the pc screen that may help protect your eyes from dust being drawn to the screen.

[Hidden in reply to Maggiet]

I use Optrex's spray and Wilko's analog of that (which is a third of the price but no quite as good). You can spray it on closed eyes, over make up if you want, and it is much less hassle than drops. Although probably not as good. I call the Optrex spray 'Optimist' but it's not quite that - although I pharmacist should know what you mean. There's only one product like it. A useful tool in one's lubrication kit?

[Maggiet in reply to Hidden]

Yes, I know the spray that you mean and may get some as my eyelids are very sore too. The only eye make up I've had on is mascara when I've gone out as I don't want to frighten children and small animals with my blonde eyelashes......

[Fruitandnutcase]

The reason I have bottles in all my pockets and know all the places I can buy them because When I use them properly my eyes feel better and I stop using them - when your eyes feel good then it is easy not to bother using them ( don't be like me!) then realising my eyes feel terrible and having to buy them. Not the way to be but that's me.

[Maggiet in reply to Fruitandnutcase]

That would be me too! I'll need to have a couple of bottles too and it's so easy to forget to take them once you feel better. I may need to set a timer when I'm at work.

[Hidden in reply to Maggiet]

And don't forget you shouldn't go on using eye drops past the use by date. If there's any infection there you could be reinfecting yourself. That's one of the advantages of the spray I mention above - the delivery system never comes in contact with the eye.

[Maggiet in reply to Hidden]

Good point, thank you. These drops are usually "use within 28 days" so I'll keep a watch for that.

[thelady2003uk]

I had to go and see an opthalmologist because I had gritty and sore eyes, he gave me some Viscotears and told me that I could have Sjogrens, to get my Rheumatiod Factor tested next time I have a blood test. He also told me that I had got 2 ingrowing bottom eyelashes, which apparently happens alot with hypo as our lashes are so dry, he took them out for me and my eyes feel alot less gritty, so it could be lashes that's causing your gritty eyes. Hope this helps

[Maggiet in reply to thelady2003uk]

Thank you very much for the tip about the eyelashes. It hasn't happened yet but certainly something to be aware of. I see my rheumatologist on 14th Jan so will be able to ask her about it all. I've certainly beensuffering from muscle and joint ache as well as the nerve pain. Such a demic, that's me! Thanks again xx

[katherine107]

i have extremely gritty and dry eyes. have had it a long time. have been to eye hospital a couple of times and they said my eyes where scratched. i get it every night, not so bad during the day. my doctor tested for sjogrens and he said i didnt have it. i have underactive thyroid and feel so fatigued all the time and am in pain. i use eye gel and get it on prescription.

[Maggiet in reply to katherine107]

Hi Katherine, thank you for your reply. I'm sorry to hear that you're in pain and tired - I've been the same since my thyroid went for a walk and decided not to come back. It's an awful condition the severity of which is only recognised by a few docs. I'll see my doc later this week and get the drops and gel. Hey ho something else for the medicine cabinet! Thanks again xx

[CarolineC57]

Hi Maggiet! I've had really dry, gritty eyes for a few years. It came on quite suddenly and was really scary at first as my eyes were so painful with no drops. Now, I have Celluvisc drops on prescription (the single-use ones - I can't tolerate the preservative in the OTC ones as that just irritates them more). I use these several times a day.

I was tested for Sjogren's as I have very dry skin, severe constipation, intimate dryness and what I thought was a dry mouth/throat too (now, I suspect my difficulties swallowing are due to my thyroid which feels swollen). The tests proved negative for Sjogren's - although my eyes are extremely dry, my ANA blood test was negative and the lip biopsy they did showed I was producing enough saliva.

I now think that my dry eyes (and the other things) are due to Hashimoto's (hypo) - though I'm not diagnosed with it yet (still trying to get some tests).

Anyway, for the dry eyes, I'd definitely recommend single-use eye drops like Celluvisc.

[Maggiet in reply to CarolineC57]

Thank you for that Caroline, I will ask the doc about single use ones. I have been diagnosed with hypothyroidism in 2006/7, along with other ailments along the way! I am seeing the rheumatologist next week so will discuss with her the possibility of Sjogrens. Thanks again xx

[Vinylrecords]

Yes, High ANA Direct, High La/SSb antibodies specific for Sjogren's. Was on Plaquenil and low dose prednisone. A Year and a half after the diagnosis they decided no, I don't have it. After a Shirmer's test, a positive blood test. No lip biopsy though. I had punctal plugs inserted in my eyes as well to produce tears. They forgot that part of the diagnostic testing was to do a lip biopsy to check for antibodies. Now, I have to go to a Sjogren's Clinic that takes 7 months for an appointment with the head doctor. I gave up waiting for him and now have the appt. next Monday but had to wait months for his associate as well. So, note these things and ask for them. 1. A Schirmer's test. 1a) a Rose Bengal stain of your eyes. 2. Serum blood work for anti Ro/SSA, anti La/SSB. AND A LIP BIOPSY! Not a darn piece of literature in my Rheumatologist's office regarding Sjogren's syndrome. This disease can be primary or secondary to Lupus, Rheumatoid Arthritis, but they always leave out Hashimoto's thyroiditis. I wish you luck, sincerely on this merry go round. Nightmare! As an afterthought the blood tests are very inconclusive for this disease. If you are lucky enough to get a positive blood test count your blessings. I was told, and this completely threw me for a loop by a highly respected Neurologist from a large University teaching hospital, that my tests were false positive after the doctor just got done stating that "We don't crossover into other medical fields that are unrelated." Really? Because she just contradicted herself. She also stated, "That all positive blood tests can be false??" When she said that I deduced by way of physics, that all negative blood tests can be positive. I thought I was in the Twilight Zone after leaving her office. I in no way went to her seeking information on Sjogrens but went seeking information on neurological problems. She addressed everything but what I went there for and did nothing more than look at my prior tests that my eye doctor took and parroted what was on his notes that I have ocular migraines. I was aware that was my eye doctors determination I did not need her to read his findings to me as I can read too. All I can say is good luck. We supposedly have the best clinics in this country regarding Sjogren's. I wonder if this disease is another "fibromyalgia" type symptom of something underlying. Just my two cents.

[Maggiet in reply to Vinylrecords]

Thank you for your advice on the tests - I like to go with advance knowledge. Like you I am also on the medical merry go round. Dr A tells you to take one thing then Dr B says that's wrong. Then nurse C tells you to double the drugs and nurse D says take the drugs as and when required. Meanwhile GP gives

me drug to counteract side effects of drugs prescribed and Dr A says no you shouldn't have those!!! Drives me nuts! Thanks again xx

[Vinylrecords in reply to Maggiet]

Great response for the real life medical care when we are complicated. Thanks for the laugh even though I know you are not being funny. But, yet you nailed what we go through and if you don't laugh - good grief knows we would be rolled up in a ball in the corner crying and that won't be me. Good luck, again. Dolores

[Maggiet in reply to Vinylrecords]

It's just madness - most people who aren't in the 'system' wouldn't believe what we go through. I had to wait 11½ weeks for a scalp biopsy after suffering blisters and itching for 12 months. Phoned for results to be told that my condition was not dermatologically related so my case was to be discussed by a group of pathologists and dermatologists. I finally got a letter 8 weeks after the biopsy to say I had inflammation of the scalp. No shit, sherlock - no wonder I wanted to shave my head to get to the itch! So 20 weeks from first being told I needed a biopsy to getting a 'result' And why everything by letter? Has the NHS not heard of emails? Sorry, rant over. No rolling in a ball for me either! Cheers, Maggie x

[Vinylrecords in reply to Maggiet]

Hey Maggie,

Just got your reply. Really, your scalp itches? Good grief, so does mine and my ears too. Guess I don't need a diagnosis and thanks for saving me big bucks by letting me know your outcome. Wow, inflammation of the scalp. I am sure you could have let them know that on your own. As mostly every autoimmune disease is caused by some form of inflammation. I like your attitude, very funny! Be aware when you see them regarding Sjogrens armed with the knowledge of the testing they will probably say you are a hypochondriac because you know the testing protocol.You know and I know that you just can't win.

Oh and Maggie, rant on! That is all we got because we certainly have no medical care. Funny thing is I wanted to shave my head too as I wanted to see what was going on with my scalp. The prednisone I know has helped with that and they are trying to taper me off and I am getting sicker and sicker with every drop in dosage. Do you have the burning tongue symptom yet? If not, just wait. I was so desperate I took to drinking olive oil. (Which did not work). It is called the scalded mouth syndrome and it really feels like someone poured boiling water into your mouth. I hope you don't have Sjogrens, then again, even if you do they will tell you that you don't. Keep smiling. Cheers, Dolores

[Maggiet in reply to Vinylrecords]

I tell the docs that my body just doesn't like me and is having a fight with itself. The docs usual reply is usually 'mmmm' which translated means 'crazy woman'! But I know what I mean even if they don't. It's like a constant battle trying to keep my health on an even

keel, but it's usually veering very sharply to starboard! Hey ho, never mind, back to work tomorrow after a 2 week shutdown to a different office that is like a large broom cupboard with no natural light whatsoever. That'll be good for my eyes - not! Tara for now (that's Yorkshire for bye bye) xx

[Vinylrecords in reply to Maggiet]

Hey Maggie,

I am rolling on the floor! They have no sense of humor do they? Could you imagine having to work with these people? I am so grateful I stayed in my field of expertise as I was offered the opportunity to sell pharmaceuticals. My entire family worked for a huge pharmaceutical firm in the US. I could never imagine having to entertain these stiffs for a living.

Great, no natural lighting. Not really good for you not knowing what kind of autoimmune disease you have for right now. I suppose every country is downsizing to broom cupboards as they don't want us too comfortable while on the job. So nice, isn't it?

I am going off topic here. My ancestors were from the UK. My Great Aunt taught at the King's School for Girls. She was a writer. Good grief, she wrote scientific books (medical) for children. She won the Carnegie award for the Radium Woman in 1939. Wish she was alive today she most likely could have diagnosed me. Thank you for the translation on the salutation as some of your words have different meanings than ours. Everyone knows we butcher the Queen's English.

Enjoy your broom cupboard. It may not be too bad. Concerned about that lighting though. Be aware of your eyes and skin, and make note of anything different. Thanks for the laughs.

Tara for now,

Dolores

[Hidden]

Hi Maggiet

I have primary sjogrens, which is when you start with sjogrens. Secondary sjogrens comes with rheumatoid arthritis. Both are auto-immune syndromes. I also suffer from Hashimoto's thyroiditis. I also see a rheumatologist and I have to say the treatment I get for Sjogrens is a lot better than thyroid.

Although I have dry eyes, my main problem is dry mouth which has caused havoc with my teeth. I also have problems with reflux oesphigitis, which presented as really bad chest pains. So bad I ended up at A and E twice with suspected heart attack. I also had my gall bladder removed but within a week the pain was back. Turns out it was caused by Sjogrens.

I take salagen and Hydroxychloriquine and also ibuprofen which helps with aches and pains.

If your problem is mainly eyes can I suggest you ask if you can have punctal plugs. They are tiny plugs in the tear ducts. They sound a bit scary but honestly they are no problem. I went to the ophthalmic dept who inserted the plugs there and then. Unfortunately by the time I got to the ophthalmologist I had already lost most of my tears so it didn't help, but it wasn't painful and I wish I had got them earlier.

Also use eye gel and drops. Most of my problem is at night so the gel is a bit thicker.

Finally I took part in some clinical trials last year of Rituximab

which helped the inflammation and hopefully this stuff will become available. As it was a double blind test I might not have had the real stuff, but if it wasn't rituximab the steroids must have worked.

A bit long winded answer but hope it helps

[Maggiet in reply to Hidden]

Thank you very much, your reply was really helpful. I have an under active thyroid but not RA. I do have terrible trouble with decay on my teeth and am forever at the dentist. I have been diagnosed with acid reflux and this can be a bit painful at times. My optician has recommended to my gp that I have gel and drops so that seems the best way to go so I'm pleased about that. I'm pleased that you got the chance to take part I'm a trial.Good luck with it all xx

[Hidden in reply to Maggiet]

Just remembered one point. The opthomologist prescribed single dose eye drops, because he said I am going to be on them for life and cannot risk getting infection or reaction to ordinary eye drops that last a month.

[Maggiet in reply to Hidden]

Thanks for that, someone else had recommended single dose drops and I'll certainly ask for them too. Cheers

[Hidden]

Hi Maggiet. I'm in the States but know what you're experiencing. I was diagnosed with Sjögren's a year ago. My eyes got so dry and gritty feeling that some days I could barely open them without having them water terribly. I also have a sore just on the inside of my left nostril that comes and goes, and sometimes I get little sore bumps on my tongue and cheeks when I ate anything, spicy or otherwise. I was also diagnosed with Hashimoto's two yrs ago after having hypothyroidism for about 8 yrs. Sad to say nothing really helps my flare ups with Sjögren's other than closely staying on my nutrition plan. A food antibody test showed very high antibodies to wheat, gluten, dairy, eggs, yeast, and peanuts/pecans. When I avoid those things, I feel much better. I hope you find relief.

[Maggiet in reply to Hidden]

Thank you for your reply, it was really interesting. One of the blood tests for Sjogrens has come back negative, I'm just waiting on the other one. I also get lumps on my tongue after eating certain foods and have blisters under

my bottom lip that just won't heal or go away. I feel like a walking wreck! I'm using the eye drops and they are a huge help. Good luck to you and thank you again