LUPUS UK
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Sjogren’s syndrome secondary to SLE

Saw my eye consultant yesterday, I am still after a year, unable to tolerate any of the hydrating drops that I've tried and yesterday the doctor said that my corneas looked 'ragged', and that something must be done. On a previous visit I had a test where small bits of blotting paper were placed on my eye balls to measure the amount of tears that I was making. The result was, nothing!

I now have a good bag containing three months worth of prednisone drops to take twice daily for a month, and ciclosporin drop to take once daily for the foreseeable future.

I have to continue with the ciclosporin even though they sting like mad.

Anyway I really hope they help as I don't like the sound of ragged corneas!

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Hello creaky...i hope these meds help you! Am so sorry the ciclosporin drops hurt...lucky for me, mine don’t hurt and they do help a lot!

My ciclodporin drops are branded Ikervis...is this the type you have? Am wondering because my impression is that the Ikervis ciclosporin drops are meant to hurt less than other versions.

Do the prednisone drops hurt too?

I agree: it is worrying when we are told our corneas are so inflammed and damaged. Now I’ve had close on 2 years of daily ciclosporin drops helping me greatly, i try to just concentrate in the positives...but i see the ophthalmologist cornea expert again soon and can’t help hoping he hasn’t more surprises in store for me,..

Hope the ciclosporin begins to hurt less soon...ciclosporin drops are vvvv specialist & expensive: the NHS doesn’t prescribe them unless first line treatments (daytime drops, nightime gels, punctal plugs etc) have proven insufficient so we really need ciclosporin...or because our corneas are simply too severely affected at an early stage of disease process

🍀😘🍀😘🍀😘 coco

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Yes Coco mine are the same brand, I know that they are expensive and I plan to just take them, pain or not as I just can't risk damaging my eyes. Go to hear that they are working very for you 💐

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Wish neither of us need these drops, but, as we do, it’s more “ok” now i have your good company, ceeaky...i’d been feeling a bit lonely on here...so far i’ve only found maybe 1 person here on these 🍀😘🍀😘

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Inflammatory diseases can be very isolating, I often feel that I am 'odd', not the same as others.

We've just been to bath for a few days, as our daughters took over caring for my elderly father.

We went to the therma spa which I always find very helpful, however they have added a sauna, I went straight in and found that it's also a physiotherm, it has infrared lamps which are not good for lupus, so I had the come straight back out again.

Not a major problem, but I know just what you mean. 💐

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Well said!!!!!!

Basically, i stay at home...just go out to health appts...get groceries...maybe meet a friend for a cuppa every 2 months...partly it’s cause my PID + immunosuppression means i avoid any enclosed spaces with other people spreading infection. But am not complaining...feel too old and too accustomed to living this way to mind...have surrendered i guess

It is what it is 🤷🏼‍♀️💐🍀😘

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I don't know if it's a possibility for you, but my corneas were getting very scratched, to the point where driving at night was almost impossible. My ophthalmologist suggested lacrimal plugs, which disallows any moisture to leave the eye. You can have them installed in the top and bottom lacrimal drains, in the corners of the eye. Since I had the plugs put in I do not have to do ANY drops, unless I run a ceiling fan or otherwise have moving air on my eyes for an extended period of time. When I went in for an unrelated corneal scratch, the eye doctor says that my corneal dystrophy (suggested as a side effect of an inability to produce enough moisture) is much better than it was prior to the plugs. I still have some corneal damage, which isn't surprising, but my eyes are quite a bit better. It might be worth looking into! I hope you can find something that will help you!

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Were your corneas scratched due to inflammatory process of a diagnosed autoimmune condition, eg sjogrens/SLE, mama? Or due to basic dry eye manifestations? It’s great plugs alone help you lots!

I don’t know if creaky’s ophthalmologist has already tried punctal plugs, but you’re right: these are not appropriate in all cases eg where active severe long term inflammatory process is involved

when inflammatory process in lupus/sjogrens dry eye patients’ corneas becomes as severe as it is in eyes like mine, the NHS will have already tried first line dry eye treatments for at least 3 years. At that point, punctal plugs alone are not enough to help eyes like mine: patients like us need second line treatments, ie immunosuppressant drops. some of us can control severe cornea inflammation with the immunosuppressant cyclosporin alone, others, like creaky, need both cyclosporin & steroid drops.

And then there are other considerations, sometimes punctal plugs will be used alongside immunosuppressant drops, but my ophthalmology cornea consultant explained that because i’m at high risk of infection due to my bone marrow dysfunction i need to avoid plugs

🍀🍀🍀🍀 coco

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Yes I have upper and lower plugs in each eye

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Hi barn :D They first diagnosed me with corneal dystrophy, but then changed that diagnosis when I saw a different doctor. I do not have Sjogren's at this point, however, the rheumatologist did say that with my history of extreme dry eye that wasn't improved by drops, that he is considering this, but at this point all I know is that the eye doctors have suggested that it might be the cause of the lack of fluid in my eyes. I am young, still in my thirties, and the problem has only been severe over the last two years, but the plugs were put in about two years ago as well, so I've had them from when the severity increased. I had bad enough dry eyes when I was younger that they tried all the drops for quite some time, which never worked. However, I can tell that my eyes have gotten a little worse, so I'm hoping that it's not getting to the point that they plugs aren't helping. I have really noticed a decrease in vision, that is not improved by my glasses, so I'm getting a little nervous that it is progressing. Thanks for your input, I am completely new at this autoimmune stuff. I'm sure I'll be learning lots, and I really appreciate it.

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Makes sense! Thanks! May not so much be that the plugs aren’t working, but rather that yiu just need more umph in your combined therapy treatment plan. Hope you’ll let us know how you get on 😘🍀

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Hi yes I have upper and lower plugs in each eye, but because I don't really produce anything they don't make that much difference.

Good to hear that they are helping you 💐

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Lacrimal plugs are of no value when you determine (by the 'Shirmer Tear Test) that the patient produces very little to no lacrimal fluid).

Dr. S. (in the USA)

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No my doctor agrees that they have made little difference.

Hopefully the new treatment will help.

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My rheumy said, on Wednesday, that lacrimal plugs do offer help to even Sjogren's patients, not all obviously, but some people can still produce some tears, even with the disease. I have had much less corneal damage since I got mine in. The rheumy said that it can get worse and the plugs then don't offer much in the way of assistance, but needing plugs in the first place is a sign of possible disease involvement.

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Hi creaky, my eyes had not quite got as bad as yours from sjogren, I too have been given drops but yours sound more healing then just wetting. One doc gave me vitaA pos eye ointment for night to protect them, also coco have much more knowledge, been wondering humidification & buying a humidifier for raising it to help with my dry everything. Winter is especially low humidity indoors with heat etc. So looking a facial kind small to put by my bed at night. Also check out sjogren health unlocked, good advise protecting your, varies google/glasses to keep moisture in or wear when your resting.. I think its bev who administersthe site & has done some videos about coping with sjogren & dry eye suggestions.... 😎 ml

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I have found that my fitted eye mask helps at night, it's shaped so it fits around the eyes and doesn't touch or press on the eye

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I wear a similar eye mask when am napping during the day & sleeping at night...helps me a lot to...👍👍👍👍

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Sorry you have started to get ragged corneas. I think this sometimes happens even when the eyes don’t feel that dry - so eye specialists have told me as a reminder to be extra vigilant - especially if using the computer to read a lot or work relying on eyes. This leads to lack of blinking which is very destructive.

I’m lucky that, for me dry eyes are well managed by drops and punctal plugs now and I’ve never had corneal abrasions. Not that my very systemic Sjögren’s is mild at all but I’m at least glad for my so far non-damaging Sicca. The ophthalmologist credits my regular use of hyloforte drops along with Artelac gel as I don’t have many tears at all. But I do find keeping on top of mybomean gland dysfunction and severe light sensitivity with heated eyepads, massage and prescription shades is very important.

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Well said, twitchy! Am v much identifying with every word in your reply...because i was ultra compliant & conscientious with all those elements in my nhs eye clinic dry eye regime for over 3 years and had been thinking i was doing quite well all things considered, when at my 4th annual eye clinic the cornea expert ophthalmologist got very excited and, before i could say jack Robinson, he was explaining to his student exact details of why they had to get me onto expensive cyclosporin drops immediately!

Now i know this is the nhs protocol: 3 years on first line treatments (eg eye clinic had me on hyloforte drops + artelac nightime gel + meibomian gland eye dag treatment with eyelid massage every 24 hours for 3 years, with annual exams in clinic). Here is my initial dry eye diagnosis:

Abacterial Blepharitis, MBG Dysfunction, Punctate Keratoconjunctivitis Sicca

After 3 years on first line dry eye treatments, nhs eye clinic protocol is to do a big review and put us straight onto ciclosporin drops if our cornea inflammation meets certain diagnostic criteria. Here is the diagnosis that resulted in my cornea expert prescribing ciclosporin:

Absent tear meniscus, filamentary keratitis, markedly reduced tear film break up time, chronic ocular surface inflammation

I was a bit shocked & anxious at first, because i was totally unaware of this protocol. And my gp surgery dispensary was awkward about sourcing such an expensive unusual treatment. but then ciclosporin drops helped a lot! So i looked up ciclosporin drops treatment on the NICE website and learned this ciclosporin protocol is standard for patients like us....and with good reason: sjogrens cornea inflammation really can segue into blindness.

🍀😘🍀😘🍀😘

PS now: as well as the daily ciclosporin drops, i continue to take all the same first line treatments i was on for those initial 3 years. My husband says my eyes really do look a lot better now....

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I didn’t know about this protocol I must say? I’ve been using drops and gel for about 4 years now. The ophthalmologist who inserted my plugs then tried to discharge me from the eye clinic but I wasn’t having it!

He saw me again at my insistence and said that i seemed to be managing my eyes well with drops and now the plugs - that due to pressure on massive clinic lists I could just carry on seeing optician as and when required.

He then checked my plugs, tested my eyes again for dryness and seemed to change his mind - commented that they are still acutely dry although no surface damage yet, due to my topical vigilance he assumes.

He said he’d put me down for 4 monthly checks so I just said yearly will do thanks. I can’t wait to be seen for 2 hours in that place four times a year!

He said okay as long as I promise to contact him immediately if anything changes - couldn’t believe the turn about?! I think things are so bad in some departments now that if you are a conscientious patient they will boot you off their lists without a thought - even if you do have 3 types of eye disease as part of confirmed Sjögren’s! X

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I think you are right! I think i’m just lucky that my clinic has this hot shot cornea expert running a tight ship...he is clearly an important & v with-it guy...he always has a student with him, which is how i learn so much about the specifics of my actual condition. I’d been thinking i’d got my dry eyes relatively under control with those first line treatments for 3 years...and they did help, but not enough

So why do some sjogrens dry eye patients need more than first line treatments? Who knows...maybe because my dry eye was v early onset and my GPs + opticians neglected me for over 10 years even though i begged for help. Bear in mind, i was 62 or so when i had to add ciclosporin to my treatment plan. Anyway, my feeling is that most nhs eye clinics are as you’ve described, and this is how some sjogrens patients’ eyes end up suffering badly. It’s a tragedy. 🍀😘

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I couldn’t agree more about the tragedy aspect. Mind you my friend with Sjögren’s has been under same eye clinic for years and has a hot line number and her eyes are as yet unscathed and she’s 64. And also someone I know with severe RA and Sjögren’s was given direct line and both are seen 4 monthly so I can only assume this dire pressure is new to my eye clinic.

All around me were elderly people so I’m guessing the pressure is coming from the whole ageing population and increase in cataract surgery. I still think Sjögren’s patients should be a priority though and I told him this. X

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PS this link takes you to the NICE guidance:

nice.org.uk/guidance/ta369

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It must be slightly different here in Wales, I've only been referred to the eye clinic for just over a year.

I've also been reading up about serum drops. You give some blood and it goes to a lab to have the serum separated out then they send it back you to use as eye drops, as it is part of you it's much easier to tolerate.

I asked about it at my appointment as was told that I have to have a trial of ciclosporin first, and even then it hard to get it funded.

So fingers crossed that this works!

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Yes, me too..i’ve been reading about serum drops....planning to ask about these when am in eye clinic again next month 🤷🏼‍♀️😏

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I would be very interested to hear how you get on with that.

I also read about a study where patients were taught to use a small needle to pick their finger and apply a drop of their own blood to their eye. Not sure how practical/hygienic this would be! You might get some strange looks if you did it on the bus 😂

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🧛🏻‍♀️ 💉not for me 😂...when i learned about the serum system i thought: the nhs won’t offer me this unless daily cyclosporin + first line treatments let me down.

At my last eye clinic, my cornea expert ophthalmologist warned me that they don’t yet know much about the side effects of long term treatment with ciclosporin drops. He explained that therefore the current protocol is to pause ciclosporin after 2 years IF the patient’s inflammatory cornea degeneration seems to have stabilised. So, in effect, the pause is an experiment to see just how stable you really are. but, he said, in your case we’ve had to struggle so long & hard to damp cornea inflammation down as much as it has, that there is a significant risk we’d set you back by pausing ciclosporin....which would be very bad

Then he asked his student what we’d need to watch me closely for IF we continue ciclosporin without pause. The student said CIN (conjunctival intraepithelial neoplasia aka squamous cell cancer of the conjunctiva). And then the 3 of us discussed my history of rare malignant cancer of the connective tissues. I decided that because he is promising to monitoring me closely, i’m happy to continue ciclosporin without pause...and i told them that i’m so distracted & busy with rheumatology & immunology & gastroenterology & colorectal trying to coax my GI tract out of intestinal failure/pseudo obstruction, the last thing i need now is for cornea inflammation to flare up again. He was lovely: said something sympathetic...and agreed no pause + told me to SOS him any time via his secretary, + promised the monitoring i need.

I’m too old, battle hardened etc not to realise that, to him, i’m mainly an interesting chemistry experiment...but i am impressed by the degree of humanity he has shown me over the years. I think he’s one of the good guys...time will tell....

😘🍀😘🍀😘🍀

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If it was effective though, the only cost is a supply of finger pricking lancets, and the monitoring.

I might consider it it it was offered.

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Hi Twitchytoes, I've had every moisture drop ointment on the market, they just make my eyes so uncomfortable I find it impossible to use them.

I give my eyes a ten minute hot compress every night. 💐

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I’m really lucky that I can use drops without any pain or problem - apart from the tiny single use drops which I hate as they are too fiddly for my numb fingertips and scratch me horribly. I’ve been using Lacrilube since I was a kid - dry eyes started then with alopecia areata and eczema. Only time things got really unbearably bad in my eyes was when I was on Amitriptyline - the optician was shocked then by the state they were in.

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Yes I gave up on amitriptyline pretty quickly too!

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Sadly lots of people don’t make this connection until the Sicca is pretty advanced. My neurologist has just recommended it to my GP for me for neuropathy despite me explaining to her the dire effects on my eyes. Her comment “yes but you can just use more drops?!”🙄😎 X

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I know, I had a dermatologist who was determined to put me on longterm lymocycline for rosacea, even though it is contraindicated in SLE, said, "well you might be fine"

Can't think why I'd want to take that risk personally!

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One thing that I have done, is that I've stopped reading. I had to give up real books as they hurt my hands, now I don't even read on my kindle, I listen to audio books instead it's great as I can listen while doing something else 🙂

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Good move 👏👏👏👏👏👏💐🍀😘

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I love having radio (radio 4 and radio Scotland) on and listening to thrillers on podcast while working in the studio. I wear my prescription varifocal shades throughout the day due to extreme light sensitivity, even while working. Fortunately the dryness hasn’t affected my vision - I have exceptionally strong optic nerves apparently but I am very long sighted with stigmatism. X

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I've just listened to Joanna canon's books, 'The trouble with goats and sheep' and 'Two things about Elsie'.

So well narrated , I just can't imagine that I could have enjoyed them more if I had read them.

I listen to radio 4 alot too. I do alot of needle felting and wet felting and I love to have a book or radio play on to listen too🙂

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Where do you get your audio books from? I stitch a lot as well as drawing and painting and keep meaning to find audio books.

The only thing about making stuff is that we tend not to blink while staring at sticking or mark making same as reading. My eye doc says this is a significant cause of dry eye so we must remember to blink!! X

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I use the audible app on my kindle, they cost about £15.00for a newish book, but I've bought some for £2.00 every few weeks they give me a freebe.

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Thanks I’ll definitely get this app! X

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You can borrow audio book from most libraries.

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I've had this for 5 years & quite young! My eyes can only tolerate Hylo Forte, I have all four punctal plugs & severe dry eyes, aqueous & evaporative, inflammation flares & lots of other eye probe. I found Ciclosporin ointment at night to sting much less than the Ikervis drops but always ensure your eyes arent dry, i.e. use the normal drops beforehand following the timing rules. Taking Hydroxychloroquine means I don't have to use steroid eye drops currently but FML are the preferred choice over Prednisone for long term use. I also sleep with an eye mask & do the heated eye mask every day followed by eyelid massage using the silicone eyepeace. Oh & moisture chamber glasses to keep the air out at all times! And they still hurt & inflame which is sssooo painful but I've improved from when it started.

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Hi LH44: what is Ophthalmology’s view on which of your AID are most responsible for your eye conditions? Eg vasculitis, SLE, Sjogrens...am not sure of your diagnoses (is systemic sclerosus in your mix?). Is yours a chronic ocular surface inflammation, or are your veins etc involved?

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Hi, Sjogrens from Rheum, Vasculitis (Wegeners/GPA but Rheum agrees with me RP) from Ophthalmologist which took a long time, as soon as I had hearing loss & showed a photo of my red skin & my eye lids were swollen on a meibography Vasculitis was clear & that was after 3+ yrs of a nightmare!! Funnily enough some of my extended/family have different forms of vasculitis. I also have Hashimotos Thyroiditis. I've had over 10 eye diagnoses but I'd be interested to know what one caused white lumps inside my eyeballs - anyone had that? When some came through the cornea they were painful! They're kept at bay with immunosuppression.

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Thanks! That’s A LOT!

So maybe the sjogrens effect is especially the ocular surface inflammation (cornea)? The vasculitis is especially the vascular stuff? Am curious because my small vessel vasculitis is causing a lot of widespread trouble elsewhere...and can’t help wondering about my eyes.

Interestingly, my sisterinlaw has early onset kerataconus...over the years, she has had 2 cornea transplants on each eye. Ikervis ciclosporin drops are prescribed as treatmrnt for this...but isn’t keratoconus not inflammatory? I think the ikervis is for inflammation due to transplant...am not expecting you to know about this, but you may know cause you are v experienced! My husband’s family has AIB going, eg both he & another sister have early onset crohns.

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Honestly I'm not too sure but dryness comes from inflammation doesn't it so you'd start to think the Vasculitis started it, especially when you have inflamed eyes which are covered in blood vessels! Have they said which small vessel Vasculitis you have? Do you have any ear/hearing problems? Ciclosporin alone isn't enough to stop my eye inflammation flares, if I'm not taking Hydroxychloroquine I have to use FUL steroid eye drops.

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Interesting, thanks!!!!

My SLE was infant onset, but went without daily immunosuppression until my 50s because the diagnosis got lost. My dry eyes onset was in my 30s....and was definitely even worse before i started daily hydroxy + myco + pred as of 7 years ago...and maybe amitrip is helping too. For sure my first 3 years on a frontline ophthalmology sjogrens treatment plan couldn’t have helped as much had i not already been in the combined lupus meds (eg a few years ago when immunology had me pause hydroxy for 5 months while they investigated my bone marrow dysfunction, my eyes got worse)

Rheumatology just says my vasculitis rashes etc are small vessel vasculitis...it damps down on these combined lupus meds, so, of course, no further investigations to be more specific re type

Yes, have had bad AID-related vestibular neuritis persistently since my late 20s (am 64) which again damps down to bearable levels on my combined lupus meds,.also have nerve-related hearing loss which developed in my 50s, but not bad enough for investigations (so far)

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PS has your ophthalmologist mentioned monitoring you for CIN (conjunctival intraepithelial neoplasia aka squamous cell cancer of the conjunctiva) because you’re staying on ciclosporin drops long term? (I explained why mine warned me about CIN in one of my replies above)?

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No he hasn't, I've never heard of that, the Ciclosporin ointment is unlicensed too, it's actually for animals! I will have to ask as I've used it a long time & told it would be long term.

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Please do ask: i’ll be v interested!

How often are you monitored in eye clinic?

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Every 3 months

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That’s excellent! Clearly the system is doing as right by you as poss. 👍🍀😘

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Have you been considered for Serum Eye Drops?

rcophth.ac.uk/wp-content/up...

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We've never discussed them, I've been offered private treatment (IRPL & Mibo flow) which I'd have to pay for & it's expensive! It's a shame the NHS don't give those in special cases.

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LH44: Have i got this right: Your NHS ophthalmologist offered these via private treatments?

And you too, creaky?

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No replies are out of sequence Coco, I haven't been offered anything privately

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Yes, private as not available on NHS! Are you in UK? I wondered what benefits I'd be likely to get being housebound with these eye issues? Always worked but think its coming to an end as much as I hate to say it.

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Gosh! I’ve been wondering how it feels for an nhs consultant to explain something i need is available privately only! Am v sorry, LH44. What a situation! Where are you in treatment?

Yes, i’m a british citizen & a UK resident since the late 1970s, but was born in the USA. Most of my clinics are at Addenbrookes in Cambridge

I had to give up work early due to illness.

There are forum frends here with a lot of experience re benefits...maybe you’ll post that question?

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I always believed I'd work but with eyes like this, I wonder if I'm kidding myself?! What's really missing is getting diagnosed with autoimmune/eye conditions so your life completely changes yet there's no help or support on how to deal with the actual conditions or the life/work changes.

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My impression is that the royal coll. of ophth. is gritting its teeth & facing up to its responsibility to those of us with life changing incurable ocular inflammatory process...reading their big 2017 serum treatment guidelines impressed me. But whether they are getting their act together re supporting us through life/work changes is another matter....i hope you find a way to continue to work. When i had to take early retirement at 45, i continued with very part time consultancy despite being housebound...this transition to full retirement did help me a lot emotionally & financially. Wishing you every best wish

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I had to take ill health retirement at 50 due to my joint pain and fatigue. My eye problems did not start until several years later. I think that I would have benefited from a slow wind down, rather than a sudden stop, but it wasn't possible.

I had a huge flare-up which just floored me. I was offered an alternative, less physical job, but I was also an incredibly stressful role and I just knew that I didn't need that. Luckily I got to take my pension, otherwise we would have been in quite a difficult position financially as we were still partly supporting our youngest daughter at the time.

I stillmiss work, but I've come to trims with it now, although when others are talking about all the choices they have, I do sometimes feel sad.

Good luck LH44, time to put you heath first.

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Me too

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That's interesting about the ointment stinging less, thankyou

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Good point LH44: Yes, right from the outset, i was so keen not to get the pain reaction that I’ve always made sure to have hyloforte drops in the hours leading up to the ciclosporin...of course the ikervis instructions sheet does specify the length of time before & after the ciclosporin that nothing else should go in your eyes...i have never experienced any pain with ikervis...maybe this moisturising is why 😘🍀

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My eyes burn sometimes. Cannot handle sun at all or bright light, especially flourescent. Thank for it is another appointment I have been putting off.

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Yes, even with all my treatments, artificial light & sunlight set of my eye inflammation within mins!

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Creaky: 1st, you have the treatment backwards. You should be taking the cyclosporin drops (Restasis here in the USA) twice a day and........if you have to, for a short period only take a steroid drop like LOTOMAX drops twice a day for a couple of weeks ......then slowly decrease the steroid drops to once a day and then hopefully stop them. I like LOTOMAX GEL DROPS the most because they have the least propensity for increasing eye pressure and/or other side effects of a steroid. It can take up to 3+ months to get maximum effect from the cyclosporin drop. Most people that develop severe dry eye syndrome from Lupus and/or Sjogrens also develop 'MGD' (meibomian gland dysfunction) - that's the oily layer that prevents the lacrimal tears from evaporating. The tears comprise 3 layers, mucin, lacrimal tears and an oily layer that is produced from the meibomian gland that prevents the lacrimal tears from evaporating quickly. SO, YOU MUST TREAT THE MGD AS WELL. You should be using a warm compress over both eyes for about 5-8 minutes twice a day then hopefully only once a day (this would be for the rest of your life). The 'shirmer tear test' that you describe only confirms you have severe dry eye, not necessarily Sjogrens (Lupus can cause severe dry eye WITHOUT having Sjogrens. You need special blood test to see if you also have Sjogrens.

If after all this the cyclosporin does not work then your Eye Doctor should try switching you to 'Xiidra drops' to see if they might help (they are a little thicker and a little more oily than the cyclosprin drops).

If I can be of any other help, please contact me.

Dr. S. (in the USA) (retired Neuro-Ophthalmologist)

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Hello vaderviper:

i’d be very grateful for your views re long term daily ikervis ciclosporine drop use (alongside daily hyloforte drop, artelac nightime gel + daily MGD eye bag treatments) for early onset SLE & SS dry eye manifestations inc absent tear meniscus, filamentary keratitis, markedly reduced tear film break up time, chronic ocular surface inflammation.

I’m asking because as a USA expert, your views may differ from those of my UK NHS expert:

At my last eye clinic, my cornea expert ophthalmologist warned me that they don’t yet know much about the side effects of long term treatment with ciclosporin drops. He explained that therefore the current protocol is to pause ciclosporin after 2 years IF the patient’s inflammatory cornea degeneration seems to have stabilised. So, in effect, the pause is an experiment to see just how stable you really are. but, he said, in your case we’ve had to struggle so long & hard to damp cornea inflammation down as much as it has, that there is a significant risk we’d set you back by pausing ciclosporin....which would be very bad

Then he asked his student what we’d need to watch me closely for IF we continue ciclosporin without pause. The student said CIN (conjunctival intraepithelial neoplasia aka squamous cell cancer of the conjunctiva). And then the 3 of us discussed my history of rare malignant cancer of the connective tissues. I decided that because he is promising to monitoring me closely, i’m happy to continue ciclosporin without pause...and i told them that i’m so distracted & busy with rheumatology & immunology & gastroenterology & colorectal trying to coax my GI tract out of intestinal failure/pseudo obstruction, the last thing i need now is for cornea inflammation to flare up again. He was lovely: said something sympathetic...and agreed no pause + told me to SOS him any time via his secretary, + promised the monitoring i need.

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First, let me say as of today there is nothing I have seen to suggest that long term use of cyclosporine drops can lead to Squamous conjunctival neoplasia, however it is certainly possible. I have taken Restasis almost 3 years now and have my eyes checked every 6 months for any corneal changes. [cyclosporin drops have not been out long enough to truly determine long term side effects]. Your chronic ocular surface inflammation and filamentary keratitis would concern me enough to want to more aggressively treat it (my own personal opinion- doesn't mean I am right - but I treat almost any disease that is chronic if I am able. You may want to ask your Ophthalmologist (he/she knows your eyes better that anyone else) if he would consider using "Prokera" for your filamentary keratitis. Prokera is actually a piece of amniotic membrane that has natural therapeutic actions that help damaged eye surfaces heal. Eyes treated with Prokera have quicker healing, less pain, less scarring, and less inflammation. Some chronic topical eye inflammations and filamentary keratitis have benefited from it's use.

I wish you good luck and please contact me if i can ever be of help.

Dr. S. (in the USA)

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Thanks Dr S: so you & 1 are on a similar treatment & monitoring plan (except i’m going on 3 years of daily ikervis + the usual first line drops etc). Which is reassuring.

Yes, i’d found info about Prokera last year...haven’t checked to see what NICE says about it for the NHS...it is v interesting and i’ll look into it further.

Also, i’ve found NHS interest in that individualised serum drops treatment (derived from your own blood) and creaky mentioned another treatment involving blood from pricking your own finger...i forget the medical terms...do you have a view on these?

Thanks again!

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Barnclown

You mentioned "Also, i’ve found NHS interest in that individualised serum drops treatment (derived from your own blood) and creaky mentioned another treatment involving blood from pricking your own finger...i forget the medical terms...do you have a view on these?" I think you are referring to what we term "autologous transplant". I am not familiar with using that for the treatment of severe dry eyes due to an autoimmune disease. It would not surprise me if something like that were available in the UK, not yet here in the USA.

Dr. S.

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Sounds right, Thanks! This morning i searched through my Eyes file, but couldn’t find the document. Interesting differences between the USA & the UK...

PS YES: found it! Serum Eye Drops (SED) for Severe Ocular Surface Disease (OSD)....here is the 2017 Royal College of Ophthalmologists clinical guidelines:

rcophth.ac.uk/wp-content/up...

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Thankyou for your response, which I read with interest. Obviously I have to follow the treatment prescribed by my doctors for now. I am prescribed a reducing dose of prednisone over the next month, and I do not know how long I will have to take the ciclosporin drops. My doctor did mention that there are other choices, but wanted me to try these first.

I do rely alot at the moment on hot compresses as they do offer some relief. Seriously looking at getting some moisture chamber glasses, particularly for windy days and worst of all air con buildings!

Thanks again for your help.

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creaky,

Please ask your Ophthalmologist if he/she has heard of Lotomax (may only be in USA, but I doubt it because the UK is often ahead of us in using meds that are not yet approved here). The UK may not allow its approval (if available, because it is absurdly expensive - $270.00 here in the USA where ALL drugs are VASTLY OVERPRICED!). If not covered by your insurance plan, $270 for a 5ml bottle is often more than many people can afford. I have many of my patients order their meds from the UK because they can save up to 80%! However, I do prescribe it for severe dry eye along with cyclosporin for the 1st 2-3 weeks to help bring inflammation down. All ocular steroids can increase eye pressure (and other problems) however, because Lotomax works a little differently it has a far less propensity for inducing ocular problems. As a matter of fact, when I flare, I take Lotomax for 2-3 days to calm down the inflammation.

Dr. S.

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Thankyou Vader viper I will do that, sorry it's taken me a while to read through all these messages and reply!

Looks like I hit on a hot topic! 😁

Once again thanks

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Weirdest thing!

We came back from our break, after I had read all these messages in the car, to find that our daughters had to take our cat to the vet in our absence, due to a scratched cornea and an ulcerated eye!

So our poor boy now has 2 sets of eye drops too!

Thankyou all so much for your advice and support, it is appreciated as always.

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And i can’t thank you enough for this 🌟🌟🌟🌟🌟discussion, creaky....several years ago when i started ciclosporin ikervis drops i posted here & on several other forums and only found 1 or 2 people on ikervis....since then i’ve maybe met 1 more person. So this wonderful response to your post is fantastic for me! 👍👍👍👍

Our big lurcher tommy managed to get a dreadful ulcer on his eyeball once...treatment was a long ordeal, but he did heal eventually. Wishing your poor cat well soon 🤞🤞🤞🤞

🍀😘🍀😘🍀😘 coco

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Thankyou, he's a bit grumpy today, fed up of being wrestled to the ground and having gunk, squirted into his eye.

He is an expert in flicking it everywhere!

Husband says that he's glad he doesn't have to do the same to me, luckily I get to put my own drop in😀

It's good to get these discussions going, shared knowledge helps us all.

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❤️👏👏👏👏🍀😘

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Thank you. It is nice to not feel alone. Have always felt like oddball.

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It's a pleasure nanno, I feel that way too sometimes.

I've often wished that I could make my body behave differently, but in the end we just all have to work with what we've got.

I do think that my health problems have made me more resourceful, when I see others falling apart over the smallest problems, I have to work hard not to roll my eyes.

Stay well ☺️

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exactly

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Hello creaky...just checking in because here in Suffolk the pharmacies are unable to get Ikervis because their suppliers are telling them there is a longstanding supply problem. Have you run into this supply problem too?

Today i phoned my consultant’s secretary who will ask him to write me a prescript for the hospital pharmacy if they still have stocks of ikervis...or otherwise prescribe the best alternative. She is due to phone me back later today...

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Hi, no I'm on my first supply from the hospital pharmacy, but my very efficient GP has already added it to my repeat prescription so when I picked it up yesterday, (I'm going to need a wheelbarrow soon!) there was another 2month supply!

So I will be OK for months, I hope they find some for you, tell them there seems to be plenty in south Wales.

Mayhem in the pharmacy here yesterday, due to the weather last week they were unable to fill prescriptions from last Wednesday onwards as no deliveries coming in, then everybody trooped in after the weather running sort of things. I had to wait for about an hour as I had no prednisone for today, I felt really sorry for the staff, they were being pulled in all directions.

Let me know how it goes with your hospital prescription 💐

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THANKS!

Glad you’re sorted..am seeing my GP next week & will tell her to increase my ikervis to 2 boxes at each request!

🍀😘🍀😘🍀😘

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Good plan, I get two month of everything, otherwise I feel like I'm making a grove in the pavement all the way to the pharmacy! 😀

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Just back from collecting my consultant’s ikervis from hospital dispensary: he gave me 3 boxes!

Yes: all my repeat meds (6 pages of GP surgery listing) are at least 2 months’ worth each, but the surgery has been SCROOGE-like about ikervis right from the outset...well, am not letting that continue!

🍀😘🍀😘🍀😘

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