Sjogren's and eyes: I suffer with sjogren's and have... - NRAS

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Sjogren's and eyes

Bailybiscuit profile image
111 Replies

I suffer with sjogren's and have been seen by many eye Dr's at my local hospital that is

Addenbrooke's Cambridge. The last Dr I saw told me I had tried everything I could try. My eye's

have been reasonably good on very calm days but a windy day upsets them and now the colder

weather. The thought of having to put up with eyes like I have for the whole of winter is

unbearable and I wondered if there is anyone else like me and what do you do? I have tried just

about all eye drops and all the thicker gel type ones but none work more than a few minutes,

seconds really. I have also used the heated eye pad as advised by Specsavers Dry eye clinic but was

told to stop it by the hospital, it didn't help anyway. My husband suggested seeing someone

privately but does anyone know if they have access to other eye drops? I would really like to

know about anything else I can try. I have glasses with the sides in which although seem to keep

moisture in don't really help.

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111 Replies
Kate2628 profile image
Kate2628

Hi Babybiscuit, I have RA and sorgens, my GP referred me to moorefields hospital for London, they have been very good, I use eye drops continuously through the day eye gel when l go to bed, As l have no tears if l cry, they can also put tiny plugs in to stop what tears u have from draining away, l use 2 eye drops Hyclo forte , and hycosa and extrax , Hycosan Night bed time hope this may help

Kate2628 profile image
Kate2628 in reply to Kate2628

Hi again Babybisciut, sorry l spelt the eye drops wrong, should have been Hycosan Extra, which u can get in Boots

Bailybiscuit profile image
Bailybiscuit in reply to Kate2628

Do you mean Hylo Forte? I have those and Thealoz duo and Xailin at night and a similar one for nights starting with B whilst Xailin is out of stock. Do you know if Hycosan nights is similar to Xailin? Also are you in the area to be covered by Moore fields? Thank you for replying.

dippyd09 profile image
dippyd09 in reply to Bailybiscuit

Hycosan night is slightly thicker than Xailin as I have been getting that while Xailin isn’t available. I still wake up with really dry eyes through the night so have to use it several times during the night. I use hyloforte during the day along with clinitas gel. I really hope you find something that works. I know I struggle as my eyes are incredibly dry and painful Good luck.

Bailybiscuit profile image
Bailybiscuit in reply to dippyd09

I have some Hycosan nights but haven't used it yet, I bought a tube when we couldn't get Xailin or the alternatives but the prescription one was available at another pharmacy, so used that. I think Lacri-lube. Thank you. Good luck to you too

Fruitandnutcase profile image
Fruitandnutcase

Have you tried Omega 3 Vegan Algae oil +DHA+EPA. I find it makes a huge difference to my dry eyes but you have to use it for a long time. I use Ekopur from Amazon .

I also think you could be referred to Moorfirlds from the Cambridge area. They also have a department in Bedford hospital. You would have to ask your doctor to refer you there.

Bailybiscuit profile image
Bailybiscuit in reply to Fruitandnutcase

Thank you for replying. Would I ask my GP or the eye clinic? to refer me? I think London would be less likely for me to get there. I can't walk far and could never use a train these days. Bedford would be easier to get to. I suppose like all hospitals there is a long waiting list though. I haven't tried what you mentioned but I took Flack seed oil capsules twice a day as recommended by Harry the Specsavers dry eye specialist for a long time but it made no difference. It was for high doses of Omega 3.

Coppernob profile image
Coppernob in reply to Fruitandnutcase

Moorfields have treated me like ****. However, no reason for you not to seek their input.

Fruitandnutcase profile image
Fruitandnutcase in reply to Coppernob

Wow! That’s not good is it. I’ve heard of a few doctors with that sort of attitude these days, just in general not there.

Fruitandnutcase profile image
Fruitandnutcase

Husband says GP. I hadn’t realised how much those DHA capsules helped my eyes until I ran out and didn’t replace them and gradually I started to notice that I was needing to use more and more dry eye drops as well as night time ointment so I’m back to using them all the time.

To be honest I hadn’t paid much attention to the packaging I bought it because I read that DHA Omega 3 was good for bones but in actual fact it mentions eyes as well. So now I take them all the time and we’ve got a friend who is being treated by a hospital for his dry eyes who is also finding them successful too.

Madmusiclover profile image
Madmusiclover in reply to Fruitandnutcase

Ordered!

Bailybiscuit profile image
Bailybiscuit in reply to Fruitandnutcase

We have high strength omega 3 from Health span. I will have to investigate if they the same amounts of DHA in them. I am using drops sometimes with only minutes in-between. I also use night time ones during the day at times. I have some of the thicker ones to like Systane Ultra.

Fruitandnutcase profile image
Fruitandnutcase in reply to Bailybiscuit

I once drove to the south of France with me shoving them in every few minutes all the way down. After a couple of days of constant drops they seemed to improve but car travel and dry eyes don’t go well together for me - even wearing glasses they still dry out so it’s constant drops. I’m definitely better with the Omega 3 DHA - can’t believe I didn’t see that they were recommended for eyes though. We’ve got a friend with terrible dry eye problems - so awful he’s not able to drive and is being seen in hospital etc and I told him about the Omega 3 and he says they have helped him too.

Bailybiscuit profile image
Bailybiscuit in reply to Fruitandnutcase

I don't drive but being in a car with a window open or heating is terrible for my eyes.

Bailybiscuit profile image
Bailybiscuit in reply to Fruitandnutcase

I just realised it has Algae in it too. Thank you.

BoneyC profile image
BoneyC

I haven't seen any specific eye doctor at Addenbrookes for Sjogrens, only various GP's and Rheumatologists but I have seen an eye surgeon at Addenbrookes for apraxia eye lid opening and he prescribed a night treatment Xailin which made no difference to eye lid opening but did help a little with dry eyes. He thought treating the Sjogrens would help the eye lids open, but it didn't. His letter said I would get a 3 month follow up appointment but nothing materialised and that was well over a year ago. The treatment for apraxia of eye lid opening he said was Botox injections - I think I'll give that a miss!

Like you, my eyes are reasonably ok in calm weather, but out in windy or colder weather they just stream and it's a nuisance having to dab your eyes all the time and walk around with bloodshot eyes.

I've tried Hypromellose, Viscotears, Xailin and Lacrilube. Also bought the microwaveable eye mask which gave only temporary relief.

Hope you find some relief soon.

Bailybiscuit profile image
Bailybiscuit in reply to BoneyC

I sent my rheumatologist a message asking to see him because it had been a year in May since I last saw him. My rheumatologist told me that nothing he could give me would help my eyes. I am on Methotrexate and Imraldi plus 1mg steroids . I haven't heard of Apraxia of eye lids. My eyes don't run in cold weather at all, even when Ikervis is put in. The only time they do that is in calm weather and they feel ok.

BoneyC profile image
BoneyC in reply to Bailybiscuit

That was a great comfort, I suspect not!

Coppernob profile image
Coppernob in reply to Bailybiscuit

I wish my rheumy would give me a trial of methotrexate. How did you manage to qualify? Was it for Sjogrens only? Or other conditions as well, and I have several.

Bailybiscuit profile image
Bailybiscuit in reply to Coppernob

I had Polymyalgia which didn't respond to steroids so I was put on Methotrexate. My liver results went up high so stopped it. Then I was on Hydroxychloroquine, that caused eye pain. I suspect it was really from dry eyes as at the time I was using over the counter Hypromellose. I didn't know at that time I had Sjogrens even though I had symptoms and it wasn't until I pointed them out to the rheumatologist that he told me GP I had it. He also has said Seronegative RA, then Psoriatic arthritis, then Inflammatory arthritis. I then got restarted on Methotrexate and Humira, ( changed to Imraldi because it was cheaper)

Mymymy profile image
Mymymy

Hi Bailybiscuit, couple eye doctors suggested xiidra eyedrops for dry eyes - need a prescription for Xiidra. Per xiidra.com, "Xiidra may provide lasting symptom relief for some patients with continued twice-daily use. In clinical studies, Xiidra reduced symptoms of eye dryness at 2 weeks in 2 out of 4 studies, with improvements observed at 6 and 12 weeks in all 4 studies." Fyi...

Bailybiscuit profile image
Bailybiscuit in reply to Mymymy

Thank you. Is this in the UK as haven't heard of that one?

Mymymy profile image
Mymymy in reply to Bailybiscuit

Hi Bailybiscuit, Just researched further - found that Xiidra is not available in Europe - reason "Novartis said it has “decided to discontinue this application since the major objections raised cannot be resolved within the available time frame." It is available in the U.S. Sorry...

Bailybiscuit profile image
Bailybiscuit in reply to Mymymy

Maybe why I haven't heard of them, never mind, thanks anyway.

seabreezegirl profile image
seabreezegirl

I have it also ,goes along with my Lupus . Seems to be getting worse the older I get ( age 69 female) With all the recalls on the eye drops I have stopped using them. Please be careful . These are well known name brands . Contaminated with bad bacteria. Some people have lost their eyesight permanently. And 4 people so far have had to had to their eyes Removed because the infection was going to go back into their brains !!!

So best NOT to use the eye drops at least right now anyway.

Maybe try a warm or cool mist vaporizer in your house.

And make sure you are drinking lots of water .

Bailybiscuit profile image
Bailybiscuit in reply to seabreezegirl

Is this in the UK? A few months ago I got a phone call from my Dr's surgery asking me to check the dates as some were contaminated.

Lizard28 profile image
Lizard28

Have they done a Schirmer Test? My ophthalmologist did one and it showed him how dry my eyes were. It’s like little long bits of paper they hook at bottom of your eyes and it makes you blink, one of my eyes had hardly any tear drops in it. He decided to put the little punctual plugs in my left eye, I felt instant relief, it was a game changer for me. After a month he decided to put one in the right eye. I still use gel at night but don’t need drops during the day anymore.

Bailybiscuit profile image
Bailybiscuit in reply to Lizard28

Yes my tear evaporated in about 1 second I think, very fast. The plugs seem to make very little difference to me.

Lizard28 profile image
Lizard28 in reply to Bailybiscuit

That’s such a pity, they have been great for me. I have blepharitis as well, I know how irritating it is to have sore dry eyes. You would think they could try somthing else at the hospital for you. Wishing you all the best x

Bailybiscuit profile image
Bailybiscuit in reply to Lizard28

Thank you

Cien profile image
Cien

I was suspected as having Sjogren for 20 years but later it was confirmed as RA. I have dried eyes and mouth. With the dried mouth I chew gum as my mouth moisturiser when I am out to prevent embarrassing dry cough in public. My dried eyes seem to be fine with Hylo-Forte and very infrequently using Lacri-Lube before bed when it is really bad. I also take Omega 7 from Pharma Nord which seems to help a bit. My big issue is the Retinopathy as a consequences of hydroxychloroquine (taken in the past) toxicity. I am now under Moorfield Hospital for Hx toxicity surveillance for this condition.

I found a drop of Lacri-Lube (melted in warm temperature) before bed is the best solution for me in the severe condition. Probably you could give it a try.

Bailybiscuit profile image
Bailybiscuit in reply to Cien

I use Xailin which if my eyes are very bad I use it in the day time. When Xailin is unavailable as it is at the moment I use Lacri-lube too. My first ever drug was Hydroxychloroquine, it soon affected my eyes so it was discontinued. No not tested for Sjogrens and have Inflammatory Arthritis. I think that means they don't know. Before that each time I went the letter to the GP said a different condition. I know I have Sicca symptoms but know it could be something else. My rheumatologist when asked about the conditions as I would like to know what I have replied that all the conditions are treated by the same drugs so what does it matter? I am also Sero negative.

1ChLoE profile image
1ChLoE

My friend has Sjogren’s and AS and has serious problems with her eyes. She is waiting for her (ASE) eye drops to be delivered. Autologous Serum Eyedrops (ASE) may be prescribed for patients who suffer from severe dryness of the eye, and who do not obtain relief from conventional pharmaceutical eyedrops. They are prepared from the patient's own blood, which is processed to separate out the serum. This is the info I have copied about them. Hope it might help.

Bailybiscuit profile image
Bailybiscuit in reply to 1ChLoE

Thank you. I have heard of this being done but not sure my eye clinic has. The problem is I rarely go and the last twice has happened to be a really calm day. I tell them how bad they get but I am told they can only report on what they see t the time. I saw a lovely Dr a long while ago and he said that we must get these eyes better, they can't keep being inflamed like this. When I had my next appointment he was ill and I haven't seen him since.

1ChLoE profile image
1ChLoE in reply to Bailybiscuit

My friend also had plugs used and although they help a little, there wasn’t enough improvement. I hope you can get some improvement in your eyes. I can only imagine what it must be like.

Bailybiscuit profile image
Bailybiscuit in reply to 1ChLoE

I hope so to, thank you.

Haired profile image
Haired

Good Morning, I also have Sjogrens and Lupus. This year I have really suffered with Eye Problems and Photosensitivity even in dull weather. I have a slight tint in my sun glasses which I wear inside and out as bright lights can hurt the eyes and cause irritation /scalding / itchy feeling and so dry. I have to use them Summer and winter. Not sure if any of these match your symptoms.

Just to say I live in Ireland so our health system is different to NHS . I contribute to Private Health Cover and attend a Rheumatologist and Dermatologist. They referred me to an Ophthalmologist who ran tests and recommended as others have mentioned the heated eye mask, cleansing wipes, Hylo Extra Drops, Hylo Night ( found this hard to use) Optase Omega Vision tablets, Macu Shield , Macu Prime( Lutein) . I am also on Helliocare Photosensitivity Tablets which Dermatologist recommended ( suffered really badly with skin photosensitivity & photosensitivity of eyes during the year. ( have to purchase all of these myself but eyes are so important)

My eyes are still a problem but they have improved and use the drops much less than before. Sorry for the long reply but maybe there is something here that might help. Enjoy your week end.

Bailybiscuit profile image
Bailybiscuit in reply to Haired

I do seem similar to you. I have tinted glasses plus some that have a seal around them that do help to keep the wind out but still some seems to get through. I wear them in shops as I can't bear the air conditioning.Is Macu shield a tablet please? I have the heated mask that I used nightly until last time when I was told to stop using it. I have the wipes too. I used to like the ones with Dr Hillary Jones on the box but they stopped being made and although I have others they are not the same . Thank you for your reply I will look into the things you listed. You have a good afternoon too.

Haired profile image
Haired in reply to Bailybiscuit

The ophthalmologist suggested Macu Shield as test showed signs of early macular degeneration in both eyes. Both my sisters take these tablets although they have no signs of Macular D . Tablets can slow down the signs of the condition . I found the Heliocare Ultra D tablets did lessen the photosensitivity during the bright months. You have to make sure if already on Vit D tablets to check with Dr/rheumatologist amount you should be on.

Hope you get some relief soon. X

Colour photo
Bailybiscuit profile image
Bailybiscuit in reply to Haired

Thank you. Yes I do take Vitamin D.

Fruitandnutcase profile image
Fruitandnutcase

To my mind one of the main problems with using eye drops is that a lot of people don’t use enough.

From experience you have to use them regularly throughout the day - not just a drop morning and night time and you’ve got to keep using them even when they start to work and your eyes feel good.

I am guilty of both and that’s how I noticed when I stopped the algae oil capsules. When I take them my eyes tend not to get so dry so I get a bit sloppy in using them.

Looking at recalls it seems to be in the US and I don’t recognise any of the brands

independent.co.uk/news/worl...

I certainly wouldn’t stop using them unless directed by my doctor or optometrist but obviously if you feel you have a problem then see your optometrist (much better choice than your GP)

Optometrists train in eye conditions and need a certain amount of ‘training points’ every year to keep themselves up to date and continue practicing.

Bailybiscuit profile image
Bailybiscuit in reply to Fruitandnutcase

I hadn't seen anything about eye drops being recalled but earlier in the year I was phoned by a pharmacist at my surgery and he wanted me to check the dates on my Ikervis as some were contaminated. Mine were ok though.

Samjg profile image
Samjg

Hi , I have Sjogrens and I have been able to stop using eye drops daily by eating walnuts.

Just a handful everyday on my breakfast.

Blueberries daily are also really good for eye health. My husband who has diabetes type 1 for 30 years had diabetic retinopathy, after a year of eating walnuts and blueberries everyday it has gone.

I noticed a difference within a couple of weeks so if it’s worth a try.

Portinatx17 profile image
Portinatx17 in reply to Samjg

Sorry, I eat both of them every breakfast, not helped . Guess we are all different x

Bailybiscuit profile image
Bailybiscuit in reply to Samjg

I do eat both but maybe not enough or every day. I will certainly eat more . Thank you.

Fruitandnutcase profile image
Fruitandnutcase in reply to Samjg

That’s good news for your husband. As well as the Omega 3 I eat a lot of blueberries as well as unsalted walnuts, Brazil nuts almonds and sunflower and pumpkin seeds

Portinatx17 profile image
Portinatx17

I have had to chop and change with various eye drops over the years and some work well for a while and others from Specialist have made worse! I am in same state as you at mo. Everyday I have to see how I react to drops, had to come home from shopping beginning of wk as couldnt focus with left eye! Do you have RA too? When I flare , my eyes get much worse. Hydromellose 0.3% worked well but now discontinued. Currently on Hylotear. Feel your pain and frustration x

Bailybiscuit profile image
Bailybiscuit in reply to Portinatx17

I have Inflammatory arthritis and polymyalgia plus Osteo Arthritis and Sjogrens. I was on Hypromellose for years and lot's of others. I also used ones with preservatives but have since been changed to preservative free ones, even glaucoma ones. Not sure I have heard of Hylo year. Are you Inthe UK?

Fruitandnutcase profile image
Fruitandnutcase in reply to Bailybiscuit

Yes, there are several different Hylo products on the market, they are preservative free - I like them. hylo.de/en/products

Bailybiscuit profile image
Bailybiscuit in reply to Fruitandnutcase

I only knew of 2 of them, Hylo Forte and Hylo Nights. Do you happen to know if they are compatible with glaucoma drops and drops like Ikervis?

Fruitandnutcase profile image
Fruitandnutcase in reply to Bailybiscuit

Yes but look on here - it says ‘ If other eye drops are used, the different medicines must be given at least 15 minutes apart. Ikervis should be given last.’ Presumably because you don’t want to wash the ikervis out. For further information, see the package leaflet.

ema.europa.eu/en/documents/...

Bailybiscuit profile image
Bailybiscuit in reply to Fruitandnutcase

I was told half an hour after my glaucoma drops for Ikervis. I told a junior Dr that, he disagreed and went to see the consultant who told me. Luckily the consultant told him the same!

Fruitandnutcase profile image
Fruitandnutcase in reply to Bailybiscuit

Don’t know the exact times as I don’t use glaucoma drops but obviously you wouldn’t want to put any of them in too close together or one would wash the other out. Yes, thank goodness for the consultant. Hope the person you saw remembers for gpfuture patients.

Bailybiscuit profile image
Bailybiscuit in reply to Fruitandnutcase

I hope so to.

Bailybiscuit profile image
Bailybiscuit in reply to Fruitandnutcase

I hope so to.

ATVMWF profile image
ATVMWF

Hi Bailybiscuit,I have Sjogrens and my eyes are very dry as well.

Currently I use Clinitas drops, Viscotears gel, Celluvisc and Ikervis, which stings a bit when applied to eyes. The latter was invented by Prof Figueirda at Newcastle RVI. It a makes your eyes water profusely. You can only get it from a consultant. When my eyes are really sore the hospital prescribes prednisone or dexamethasone drops. If none of that works they can put in punctual plugs directly into your eyes to stop the tears draining away.

I have also heard of some people getting drops made from their own blood plasma. This only seems to be available in Liverpool, or Minefields.

Hope this info helps.

ATVMWF

Bailybiscuit profile image
Bailybiscuit in reply to ATVMWF

I have had Clinics but they stopped working. The ones like Celluvisc and Viscotears my eyes seem to be allergic to. I had a huge carrier bag of Celluvisc. The hospital waste so much before finding out if I can use them. I have had plugs put in that really make no difference at all. I was treated with some steroid drops for 2 weeks I think but they did nothing. Also I have Ikervis twice a day but not sure that works. My eyes seem to depend on the weather and what wind there is. If it's from the West or South West then that's ok. If it's from the East or North it isn't and even if I am indoors it still seems to depend on the wind. I have told the eye clinic but they just look at me as if I am strange. I have heard about people having something made from their own eyes but my hospital don't do it. Moorfields is impossible to get to , Bedford is possible but that probably means always attending there for my eyes.

ATVMWF profile image
ATVMWF in reply to Bailybiscuit

Sounds like you have tried most things available. Don't know what to suggest really. I hope you find something though that gets you relief as having sore, gritty eyes all the time drags you down.ATVMWF

Bailybiscuit profile image
Bailybiscuit in reply to ATVMWF

I haven't tried some of the Hylo drops yet, only 1 type. I will put cucumber on my eyes and I will try Algae and Omega 3 together. Also eat lot's of blueberries and walnuts and investigate Moorefields hospital at Bedford Hospital and hopefully find out about making eye drops from my own blood.

Kags1068 profile image
Kags1068 in reply to Bailybiscuit

Hi there

I've got a number of eye complications from the severe dryness and corneal inflammation, plus steroid induced glaucoma. I've had a number of eye surgeries too. I'm under shared care with Moorfields and my local hospital. I live in the west Midlands. I've been under the care of Moorfields for 30 years. I was referred on to them because my complications were apparently very rare and complex (I'm now blind in one eye as a result) and beyond the scope of my local hospital. The local hospitals are generally better now, but I still prefer the back-up of Moorfields. I'm not sure if you can just ask for a referral to them if you are out of area, or if it would be a case of having to be referred on by your local hospital if they were unable to deal with your case. It sounds like you have been prescribed most of the treatments I've tried (punctal plugs, ikervis, etc). Have you ever tried Ilube (Acetylcycsteine) eye drops? They can sometimes help as an addition. Other than that, assuming you don't have any active inflammation that requires steroid eye drops, it's unfortunately mostly a case a trial and error with the eye drops - which is a complete pain. I've learned I can't seem to tolerate any which seem to contain sodium hyaluronate (such as the thealoz duo and others). They seem to make my eyes drier, which sounds ridiculous, but they do. A lot of Consultant's recommend those drops too, so thankfully, they must suit some people. I have to stick to plain hypromellose. I was using one called Evolve Everyday, but cannot source it at present. After some experimentation, I'm now using TEAR LAC which is made by scope pharmaceuticals, is preservative free and also phosphate free (which is helpful to the cornea). At night I use a very old-fashioned ointment called simple eye ointment that I've used for over 30 years. I have tested some of the newer ones over the years, but again, can't get on with them. I have to use the drops every 10-15 mins, all day, every day and wake up during the night with the dryness. It's exacerbated as my lids don't fully close. I've been lucky enough to have also been prescribed the blood serum eye drops from Moorfields. I've been using them for about 5-6 years. They are very good, but not a miraculous answer. I have the allogeneic version which means they are made out of someone elses donated blood rather than my own. I opted for this version as I'm often anaemic and have terrible veins, plus you have to go particular centres to have the blood taken and my nearest was Birmingham which would have been very difficult every 3 months. I believe it's a tight criteria to be able to access these kinds of drops. Luckily, I was asked to trial them. I don't know if all eye departments can access them. I believe there's quite a waiting list, and as I say you have to reach certain levels on the corneal staining test for patches on the cornea, etc. I still have to use everything else just the same. I also use glaucoma drops. I'm afraid, as with so many of these things, there are only a certain amount of treatments, and once we reach a certain point, we're very much left to manage it ourselves. Best wishes.

Bailybiscuit profile image
Bailybiscuit in reply to Kags1068

I have glaucoma too and have had laser surgery which wasn't successful so still have the drops. I haven't tried Ilube eye drops either or the TEAR LAC either. I will look at all of them. The travelling would be difficult at the moment if we did have to go anywhere far as we have an old dog and no one to look after him. He gets distressed if left longer than about 3 hours. Thank you for your help.

Kags1068 profile image
Kags1068 in reply to Bailybiscuit

The glaucoma is certainly an added nuisance, isn't it? I hadto have a trabeculectomy many years ago when I was in my 20s and the pressure problems arose. It's been reasonably controlled in both eyes (with drops) since until the last few months when it's started to creep up again and the drops have been changed. The tear lac and ilube could be worth trying. Ilube is prescription only, I believe. As I said, the autologous or allogeneic blood drops are excellent, but I'm not sure of the eligibility criteria. I'm sorry your poor dog gets upset when left. It's very upsetting isn't it. Best wishes.

Bailybiscuit profile image
Bailybiscuit in reply to Kags1068

That's the problem when pets get old, it is upsetting. I expect like us as well. I will try looking those 2 up, thank you. Best wishes to you to

Kags1068 profile image
Kags1068 in reply to Bailybiscuit

Yes, it's upsetting seeing them age, but we don't want to be without them either. I'm sure your dog is much loved. I do hope you can find a bit of extra relief from something. Good luck 😊

Bailybiscuit profile image
Bailybiscuit in reply to Kags1068

He is very loved and as he is 12 next month we are making the most of him. Thank you.

Kags1068 profile image
Kags1068 in reply to Bailybiscuit

I'm sure you are.

Bailybiscuit profile image
Bailybiscuit in reply to Kags1068

Forgot to say yes the glaucoma is an added problem although in my case that came first. It was half expected because my mother had it. I do wonder about my eyes when I was a child though. I could never bear Christmas when several people smoked in the house. My eyes felt so dry. I had a lot of eye infections which my mother treated with borasic crystals or golden eye ointment. It's a wonder I still have my eyes at all!

Kags1068 profile image
Kags1068 in reply to Bailybiscuit

Oh my goodness - golden eye ointment! My original consultant at Moorfields used to get very annoyed if anyone ever used that as he said the kind of preservatives in it could eventually rot the cornea. (Not sure if that was an over exaggeration, but either way he was very against it). My glaucoma problems arose due to having to use steroid eye drops long-term. I was told it just happens in some people. I grew up with smokers in the house too, but thankfully no eye issues as a child - not until I developed RA!

Bailybiscuit profile image
Bailybiscuit in reply to Kags1068

I think Golden eye ointment had mercury in it, the one back then, but more recently the one on sale today has had some ingredients changed as that was still considered unsafe.

Kags1068 profile image
Kags1068 in reply to Bailybiscuit

Yes, you're right-I think it was the Mercury too

Hippo1234567 profile image
Hippo1234567 in reply to Bailybiscuit

Is it the lack of humidity causing the problem? I have meters in the house snd some winds bring humidity down in the house, and cold air is definitely dry. I wheel the humidifier out when it goes below 40%

Bailybiscuit profile image
Bailybiscuit in reply to Hippo1234567

I don't know. We have those little pottery things that hang in radiators in the house, also a small humidifier. Do you suffer with damp using yours? I can't bear anything like air conditioning and imagine a humidifier works the same. Yesterday my eyes were very dry and sore indoors. Husband had been in garden and I asked him if he thought the wind had changed direction. He said it was coming from the West. I looked at my watches weather app and sure enough it had gone from North. My eyes were improving and were ok all evening.

Hippo1234567 profile image
Hippo1234567 in reply to Bailybiscuit

No we don’t suffer from damp with the humidifier on, I have it where I mainly sit it doesn’t humidify the whole house. Maybe you should buy a little humidity gauge they aren’t expensive and it may help explain things. When the heating goes on it’s an extra stress on my eyes. Also certain cleaning materials indoors like those flash speed mop wipes, frying, the fan oven, any kind of diffuser, scented candles and even my dogs. So I often feel better outdoors have problems inside. I use onion goggles if I’m cooking things that set me off.

Bailybiscuit profile image
Bailybiscuit in reply to Hippo1234567

My husband is going to order a gauge or whatever it is so we can see. I have a very small humidifier by my chair but not sure it does much. I have a salt lamp and it has started to run a liquidy stuff on the outside. My son say's the humidifier has caused that, so must be doing something.

Hippo1234567 profile image
Hippo1234567 in reply to Bailybiscuit

I have a friend who has a salt lamp and I have to get her to switch it off when I’m in the room, I find it highly irritating, and I know others do. Have you tried switching it off and see if that makes a difference?

Bailybiscuit profile image
Bailybiscuit in reply to Hippo1234567

It is hardly on as I never think about it but my son reckons just by it being in the room when the humidifier is on is making it run. It's my husband who occasionally switches it on but he doesn't leave it on long because I like the lights on if I am knitting.

RAat13 profile image
RAat13

Hey.. so this may seems a bit "cliche" but I found cucumber actually works for me, for me the white of my eyes and the pink corner bits swell up, I tried eye drops and same as you works for a few minutes One day they got unbearable and I actually took myself to bed, and put cucumber on them rubbed them in and around for a bit and just laid there hoping for the best and it actually did the trick also aloe vera too, I find these work better than any eye drops or tablets x

Bailybiscuit profile image
Bailybiscuit in reply to RAat13

Years ago my mother used to say to do that but I haven't tried it for years. I have eaten home grown cucumbers all through summer but I usually stop buying them about now as they are tasteless. I will certainly try it. Do you put the Aloe in your eyes? Doesn't it sting? Thank you for your suggestions.

RAat13 profile image
RAat13 in reply to Bailybiscuit

Definitely give it go, I hope it works for you too. With the Aloe, no not directly in my eyes I rub it around my eyes but mainly on my eye lids. Good luck x

Bailybiscuit profile image
Bailybiscuit in reply to RAat13

Thank you.

seabreezegirl profile image
seabreezegirl in reply to Bailybiscuit

Do NOT put aloe in your eyes !!!

And us organic pesticide free cucumber . Just lay a slice over eyelid .

Al1954 profile image
Al1954

I also have sjogrens try your own blood drops here in my country they are called plasma rico en plaquetas they take your blood and make drops with the seum of the blood that solved my problem.They are very expensive but helped me a lot.Hope yoyou can get them other wise contact Bascom Palmer in USA

Al1954 profile image
Al1954 in reply to Al1954

Sorry i thought you were in the states see if in england someone does them.Wish you good luck

Kags1068 profile image
Kags1068 in reply to Al1954

We can get them.in the UK if you fit the eligibility (which is quite tight). I've been using them for about 5-6 years. Thankfully they are covered by our NHS, so they are free. Very grateful for them.😊

Bailybiscuit profile image
Bailybiscuit in reply to Kags1068

I don't expect I would fit the criteria as on the rare occasion I have been seen in the eye clinic it has been in a good day. No amount of explaining that they can suddenly be red, dry and sore the next day helps as they only report what they see. I actually saw someone in August and it was a warm calm day, no wind and my eyes were good. I explained how bad they had been days before but he took no notice. I also told him the large metal machine( not sure if it was air conditioning) that was right by my side did nothing to help them, it was making my eyes feel dryer. He just said " Oh yes it makes mine dry too"

Kags1068 profile image
Kags1068 in reply to Bailybiscuit

Yes, I do know what you mean (unfortunately). They do seem to have trouble grasping how much it varies for us.

Bailybiscuit profile image
Bailybiscuit in reply to Al1954

I think certain hospitals do them here but doubt I could get them from USA. I don't think the hospital I use does them but I will ask next time I go. Thank you.

Deeb1764 profile image
Deeb1764

Going thro this issue at the moment my eyes just hurt all the time but my GP has said time for ophthalmology so now waiting for an appointment. Like you done thick and thin gels and heat pads. What was reason re heat pads?

Bailybiscuit profile image
Bailybiscuit in reply to Deeb1764

Do you mean why do we use them? It's to try and get the glands in the eyes to work as they can get blocked. Blocked glands are not a problem to me though as my glands are working, just not enough tears.

Jumbo2012 profile image
Jumbo2012

If you find an answer please let me know 🙏

Bailybiscuit profile image
Bailybiscuit in reply to Jumbo2012

If I find an answer I will let everyone know!

Wannabeabago profile image
Wannabeabago

Look up Autologous Serum Eye Drops, made from your own blood and the pinnacle of eye care.

Bailybiscuit profile image
Bailybiscuit in reply to Wannabeabago

I will do. Thank you.

Kags1068 profile image
Kags1068 in reply to Wannabeabago

I've been using these drops for about 5-6 years now. They are very, very good but not a miracle cure (we should be so lucky)!! You can have autologous drops made from your own blood, or allogeneic, made from donor blood. I have the allogeneic as I'm often anaemic and have crap veins! They are just as good, and much less of a faff. It's a pretty tight criteria for eligibility though. I suppose it's perhaps an expensive process. 😊

mchokozi profile image
mchokozi in reply to Kags1068

My uncle has been using these autologous drops to excellent effect. I am glad you have had access to them.

Kags1068 profile image
Kags1068 in reply to mchokozi

Excellent- I'm very glad to hear it 😊

Wannabeabago profile image
Wannabeabago in reply to Kags1068

Yep i’ve got the ‘patient tailored’ ones too as we call them here because they wouldn’t take my own blood because of my

prednisone use.

Kags1068 profile image
Kags1068 in reply to Wannabeabago

Oops, sorry telling you something you were already well aware of!🙄 I've been on steroids for years too, but that was never mentioned to me as a reason. These things vary so much. Are you outside the UK as I've not heard the phrase patient tailored here before? If so, I hope they're not too horrendously expensive, and that they work well.I 🤞 best wishes.

Wannabeabago profile image
Wannabeabago in reply to Kags1068

Ha all good. Always happy to hear things twice lols.

Yup, I’m in Australia

mchokozi profile image
mchokozi

Sorry you are suffering like this. My Dad has Sjogren's and has had many different treatments. Most recently, he has received Stem Cell Transplants in both eyes. Now he will be starting Oxervate. It is very expensive even with insurance paying their share. Our family is hoping it will help him. Here is their website should you be interested. (There are a number of programs that provide assistance with costs here in the US, but not sure about the UK.)

oxervate.com/

Take care.

Kags1068 profile image
Kags1068 in reply to mchokozi

I'm pleased your father has access to such a new treatment and I hope it works. I'm not sure it's something we have here yet. I've had 4 (failed) corneal transplants on my now blind eye due to ulcers and perforations, but I've never heard of stem cell transplants for eyes. Interesting.

mchokozi profile image
mchokozi in reply to Kags1068

Thank you for your concern my father. I am so very sorry you have been through failed corneal transplants and suffered such a profound impact on your vision. That sounds so incredibly challenging. Yes, I am grateful he had access to this treatment. It has only recently become available after completion of clinical trials. Take care.

Kags1068 profile image
Kags1068 in reply to mchokozi

Thank you for your kind words. I do hope the new treatment works well.🤞

Bailybiscuit profile image
Bailybiscuit in reply to mchokozi

I don't think it is something they do here but thank you anyway. It sounds very interesting. I hope your Dad continues to do well.

mchokozi profile image
mchokozi

Oh, I hope they offer the treatment there very soon. It is fascinating! Thanks for your well wishes for my Dad. Take Care.

seabreezegirl profile image
seabreezegirl

Be careful of eye drops with all the recalls on them the past few months . Many seem to be contaminated with bacteria, and many people are having lots of issues . I read some people have gone blind and 4 people have had to have theirs eyes removed due to infection heading back toward brain along optic nerve .

Try a warm or cool mist vaporizer in your bedroom at night . And drink lots of water.

strongmouse profile image
strongmouse in reply to seabreezegirl

This sounds alarming. Which specific drops are you referring to and where did you read it? Most medication is checked and verified as sterile. My husband needs his drops as he doesn't produce tears and has droopy eyelids which work don't work properly. Please clarify.

strongmouse profile image
strongmouse

If it is bad on windy days maybe wearing glasses will help to protect them?

My husband has RA and dry eyes and uses hilo eye drops which help to keep them hydrated. He also has droopy eyelids. It can't be cured but can be managed.

Bailybiscuit profile image
Bailybiscuit in reply to strongmouse

I have worn glasses for years but have now got glasses with the sides sealed in. It doesn't seem to make much difference.

STILL-I-RISE26 profile image
STILL-I-RISE26

Hello I was having problems with eyes also and my Rheumatoligist told me to get eye drops without preservatives. It says it write on the box. They come in in$ividual little one dose a time containers. Iwould put the entire contents of one ampule in myeyes and it really helped. It’s over the counter eye moisturizers again “without preservatives” stated on the front of the pkg. Shesaid some people have problems with preservatives found in drops.

Bailybiscuit profile image
Bailybiscuit in reply to STILL-I-RISE26

All my drops have been preservative free for some time, thank you though.

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