IKervis (ciclosporin eye drops): Hello. I haven't... - LUPUS UK

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IKervis (ciclosporin eye drops)

Justinealexx
Justinealexx

Hello. I haven't posted here before but I have come to value the information shared here and want to contribute. I was finally diagnosed with lupus SLE in August 2017. I have secondary Sjogren's syndrome. My symptoms have been occurring for around 20 years, after pregnancy, with flares every few years. I even remember, in desperation, asking my GP about 10 years ago if I could have lupus, only to be dismissed and made to feel a little foolish. My symptoms are mostly relatively mild thankfully except for my eyes which are severely affected. For years the eye clinic at my local hospital had been mystified and asking ME why my eyes are so dry!!

I started with the usual lubricating drops. Then had 2 punctal plugs fitted. Then later the remaining 2 so all four ducts are now sealed. Sometimes I knock out a plug accidentally and it has to be replaced. For a long time this made a huge difference but then dryness crept back until it became intolerable. I was prescribed iKervis. The eye drops are inserted last thing at night. But it hurt like crazy for up to half an hour. I persevered for a week then couldn't take it any longer. My rheumatologist was sympathetic and prescribed pilocarpine tablets instead. They were effective but I struggled with the shivers and sweats as a side effect. Eventually I agreed with the eye clinic corneal consultant that I'd give the iKervis another go. I'd read that if I could break through the worst few days that the side effects would ease and settle.

After about 8 or 9 days there was barely any stinging. Beyond that it got even better. I still have four punctual plugs as well. My eyes are the best they've felt in a decade! They are actually occasionally watering! The dry grittiness is gone and there's no sticky stringy muck. The consultant is delighted. He said he only wishes more of his patients would persevere.

So, that's really why I'm writing now. To try and encourage anyone facing similar symptoms and with this prescription to hang in there and trust that you will break through the initial reactions. Good luck. Happy new year to you all.

25 Replies
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Hidden
Hidden

This is great news and I’m so pleased for you.

I’d like very much to know whether these extra plugs and special drops were prescribed due to extent of your eye dryness and severe discomfort alone?

Or did you also have surface or corneal damage/ erosion perhaps?

I ask because I have Sjögren’s too and have struggled with dry eyes for decades. I have 2 plugs and attend ophthalmology annually. I mostly make do okay with frequent applications of Hyloforte drops, Atelac and VitA pos and use heat pads on my eyes daily followed by a lid massage as instructed by my optician.

But sometimes the dryness ramps up and becomes near intolerable. I sought an optician’s advice ten days ago when this happened - convinced my plugs had come out or I had conjunctivitis - only to be told it was just very severe dryness.

I have a problem with neuropathy/ ganglionopathy in my face which means I don’t feel the extreme grittiness so I only know because my vision is affected and my eyes swell up.

But opthamology are totally disinterested and keep wanting to discharge me back to the optician rather than offer to plug the other tear ducts or offer me stronger drops. They say that as my eyes are consistently very dry - but I have no surface erosion - this means I’m okay as long as I “keep doing what you’re doing”.

Mostly this makes sense I guess - but lately it has annoyed me as my vision is affected and it’s extra tiring having to remember to use drops hourly. Often this isn’t enough - a drop in the desert.

Also I now am going to have to go to the great expense of buying wrap around varifocals to prevent the wind making things worse when I’m out walking my dogs.

So I’m wondering whether to push for more plugs for upper ducts and ciclosporin drops - or perhaps I have to actually get damaged eye surfaces to warrant this?

Happy new year 2019 and I do hope your eye regime continues to work well for you.

Justinealexx
Justinealexx in reply to Hidden

Hi. You have my great sympathy. I know just how your eyes are feeling. I do have some corneal erosion, yes. When the Schirmer's test was done (paper strips inserted in the lower lid to measure tear production by absorption), I didn't even get off the mark at zero.

I did manage my symptoms with just two plugs for a couple of years. When the dryness escalated, the consultant explained that only 10-30% of moisture is lost through the upper ducts. But that in severe cases, even 10% can make a real difference. It did!

I did once encounter a consultant who was outraged when I asked him to replace a lost plug. He said 'this is only ever supposed to be a temporary solution!' I stood my ground, saying I wished I only had a temporary condition and he reluctantly replaced the plug. Since the lupus and sjogrens diagnosis, I find I'm treated with greater respect. And recognition of the auto immune cause certainly opened up the iKervis (immunosuppressent) treatment option. My vision has deteriorated quite dramatically this past 18 months but that is largely being attributed to the start of cataracts. No idea if that's connected.

I do hope you manage to find some relief from your symptoms soon. Happy to answer any other questions if I can help.

Hidden
Hidden in reply to Justinealexx

Thanks so much. I guess your eyes are probably worse than mine then.

I usually think that dry eyes are just the tip of the iceberg with Sjögren’s - mine is very systemic.

But very recently, with my vision affected and dread of going out in windy weather - I guess it’s become one of main symptoms again so I will definitely ask my optometrist what she thinks. Take care and thanks again😊

Justinealexx
Justinealexx in reply to Hidden

If plugs help you, I'd definitely say try the extra two plugs to delay going down the drug therapy route. It gave me another couple of years.

I have other symptoms too but my eyes are by far the most troublesome. You take care too 👍

Hear, Hear! This is really good news justine! Am V glad you’ve posted

Alongside the rest of my prescription combined therapy severe dry eye treatments, longterm ikervis ciclosporin drops are helping me A LOT! My other daily dry eye meds are hyloforte daytime drops + artelac nightime gel + meibomian gland dysfuntion eyebag therapy

There are only a few of us here who’ve posted about Ikervis. The details you’re sharing add important info we do best to be aware of. My NHS ophthalmology cornea service chief consultant says too few of his colleagues prescribe Ikervis treatment simply because they aren’t familar enough with it, cause the ikervis make of ciclosporin drops is relatively new. The more we all know about options like ikervis, the more we can help the NHS help us...more ophthalmologists should know that NICE-driven NHS care guidelines have been updated to include ikervis treatment in severe dry eye management protocols

rcophth.ac.uk/2015/12/respo...

So: my cornea chief prescribed me ikervis several years ago for “severe filamentary keratosis” after 3 years of eye clinic first line sjogrens dry eye protocols didn’t adequately control my cornea inflammation. he warned that ikervis might sting a lot...and the best way to avoid the pain was to use my day time hyloforte drops extra before hand (allowing at least 30min gap between these & applying ikervis). Lucky for me i’ve never had the terrible stinging...have only had a hint of it once when i forgot to hypdrate enough).

Like you, the onset of my dry eye manifestations was quite early - when i turned 40 back in the 1990s, but the NHS took years to figure out my AID & see me in Eye clinic..which perhaps accounts for the severity of my case. And there is the fact my lupus was first diagnosed when i was a toddler in the early 1950s but progressed without daily systemic treatment until my 50s (long story)

Before adding on the ikervis, my cornea chief decided I couldn’t have punctal plugs or occlusion because i have Primary Immunodeficiency Disease simultaneous with my AIDs...so my risk of infection from plugs/occlusion is too high. Meanwhile he & my lupus clinic chief rheumy didn’t want me on pilocarpine drops or orally due to my dysautonomia etc

My cornea chief says there is some concern that in some patients long term daily ciclosporin “may” contribute to conjunctival intraepithelial neoplasia (CIN), so regular monitoring at eye clinic is crucial because v few patients have been on ikervis long term so far.

If we can’t stay on ikervis long term for some reason, there are alternative tertiary treatments (autologous serum drops etc)

Happy new year XOXO Coco

louise-a
louise-a in reply to Barnclown

Ah good info re punctal plugs . I had thought about that re my Pid and now I know. Thank you for sharing. xx

Barnclown
Barnclown in reply to louise-a

You’re right lou...at our first appt, i had forgotten to mention PID to the cornea chief, but then he sorta woke me up by talking about punctal pugs/occlusion alongside ikervis if i didn’t respond pos fast enough to ikervis alone...my primaries (hEDS, SLE, PID) are all documented on the hospital system, but he did need reminding! XOXO

I'm not familiar with all the acronyms used here, still so much to learn! A good tip about hydrating alongside iKervis. I've become a bit lazy with this since my symptoms improved so much on iKervis.

I did discuss occlusion with one consultant. My punctual ducts have stretched over years of being plugged and I'm now on the largest plug size. If I lose another there's a chance they won't be able to just pop a replacement in. So I'm being super careful!

The trouble with cauterisation is it doesn't always bring total occlusion, possibly leaving a drain that then cannot any longer be plugged. So you can end up worse off, not better.

Interesting what you say about long term iKervis use being largely uncharted territory. Fingers crossed for us all 🤞

OOPS: Am v sorry

NHS: UK National Health Service (funded by our taxes)

NICE:National Institute for Health and Care Excellence (UK regulatory body that sets the “rules” for the NHS re prescribing, care guidelines etc)

AID: Autoimmune Disease

PID: Primary Immunodeficiency Disease

hEDS: hypermobile Ehlers Danlos Syndrome

SLE: Systemic Lupus Erythematosus

Hope that covers it all...but do let me know if there are any others i can help with

Ah, thank you!

You’re welcome! Do you live in the UK?

Yes I'm in the UK. It's more the medical terms and tests that I'm unsure of. But I'm learning 😉

Glad you found this forum: it’s helped me a lot over the years...and still does👍🍀

Thanks also for the RCO link. Not come across the site before so very interesting.

The Rheumatologist I go to suggested pilocarpine some years ago, and I must admit it was at a time when I was struggling with juggling many different meds and a family who completely ignored that my Sjogren's was a problem. If my memory serves me I just gave up!

The eye specialist did both eyes for pterygia. And later cataracts. My dryness was just use cellufresh during the day and ircal before bed. I recently went to the optician to check my glasses and she discovered a bleed in one eye and said go back to your Dr , and suggested Hyloforte , this is a great help, and has never been suggested by anyone over the years of great discomfort! Back to specialist, now saying, that I have a bleed, corneal abrasions, early stage glaucoma, and early macular, and yes the Sjogrens is a horrible disease, come back in 3 months! What is to happen now?

Sorry that I can't help you with information on pilocarpine. Good luck in the New Year!

I'm sorry to hear you've had such a rough time with your eyes. But do press for further treatment which you clearly need. Hyloforte is excellent for hydration but perhaps you need something that tackles the cause, not simply the symptoms. Do speak to the specialist about what is safe for your condition. Pilocarpine improved my tear (and saliva) production but I didn't like the side effects. Ciclosporin is targeting my sjogrens at the root cause which seems to make sense to me.

Good luck Adleybra!

Hi - good to hear your positive response to cyclosporine. I wanted to let you know that the punctal plugs applied commonly these days do not tend to fall out as they are tube-like and made of a sponge like material which swells when it contacts moisture. They are inserted into the tear duct (i.e. the tube that drains tears away) where they then swell and and occlude the duct. If inserted properly they sit entirely within the duct and should not fall out. The older plugs sit atop the tear duct opening (they were shaped a little like a thumbtack) and can be knocked out but have largely now been superceded. Additionally, if you have cautery, the ductal opening is tiny and the likelihood of cauterization being incomplete is exceedingly unlikely; ophthalmologists pause before considering this because it is irreversible and so if tear production picks up, runny eyes can result. Hope this helps.

Hi KiriDula. Thanks for replying. This is very interesting. I haven't had replacement plugs in probably more than 18 months and all four of mine are the silicone 'thumbtack' shape that I can feel with my fingertip and so also can catch on a face cloth, towel etc! If I do lose another, I'll definitely ask about this new style of plug. Thank you!

Hi,

I’ve started the Ikervis treatment and I’m wondering how long it’ll take to see a difference? I’m also getting really hot cheeks right near the tear canal which is worrying.... not sure if it’s a side effect. I’ve got severe dry eye disease... weirdly the drops don’t sting putting them in which is weird.

I’m running out of options and this has been on going for a year now. So soul destroying.

Sam

Hi,

I’ve started the Ikervis treatment and I’m wondering how long it’ll take to see a difference? I’m also getting really hot cheeks right near the tear canal which is worrying.... not sure if it’s a side effect. I’ve got severe dry eye disease... weirdly the drops don’t sting putting them in which is weird.

I’m running out of options and this has been on going for a year now. So soul destroying.

Sam

Hello Sam. I'm so sorry you are struggling with dry eye symptoms. It really can get you down! I think for me the real difference was already showing after a few weeks. A couple of months in, the improvement was genuinely life changing!

I had no negative side effects to report so do please report your reaction and get advice. I'm sure everyone's experience can be quite different and it's a blessing you have no initial stinging.

I have to be honest, after 12 months I started having dryness symptoms returning. The iKervis was stopped by a consultant whose opinion it was that they couldn't be working anymore and I have been treated with steroid drops (which led to increased ocular pressure!) I'm back on iKervis at my own request and still weaning off the steroids slowly. I'm not completely confident the iKervis is going to return to full effectiveness or what other treatment might be available if it doesn't (eye clinic next week). But I'm still thankful for the year of good relief I've had.

I hope the treatment works out for you 🤞

Hi

Thankyou so much for your reply

Yeah it’s really hard to deal with. I used to model and it’s affected my whole life and career and relationship the lot.

I really do hope this helps alittle.... its more the redness then the dryness.... my eyes are constantly red and I have to wear fake glasses now because I’m that paranoid. People have also presumed I’ve been on cannabis or I’m ill!! So upsetting!

I’ve had it for 3 days, just worried about my cheeks, hopefully it’s not a side effect. This is my last option

Sam x

Hi Sam. Been wondering how you're getting on. Have things settled at all?

No my eyes are terrible still

But the Ikervis wasn’t helping

Going seeing a herbalist tommorow.... running out of options. It’s soul destroying, my left eye is now closed 🤦🏼‍♀️

Sorry to hear this. I guess some treatments aren't for everyone. I do hope you find an alternative that brings some relief. Keeping my fingers crossed for you. Do let us know how you get on.

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