IKervis eye drops!? Need help.

[Martina93]

Anyone ever tried IKERVIS eye drops?

I’ve been prescribed due to my scarring and terrible dry eye disease.

I’ve had terrible flushing hot cheeks and migraines since... anyone else experienced anything?

They’ve not really helped after a week...

[Littlemisssunshine87]

I’m on these for Sjögren’s. They can take between 3-6 months to show relief, if any. I’ve nearly finished 3 months and had no improvement in my symptoms I go for my follow up at the end of the month.

Feel like it made my light sensitivity worse tbh which then in turn triggers migraines in me. No hot flushes though or any other side effects apart from the stinging when I put the drop in.

[Martina93 in reply to Littlemisssunshine87]

3-6 months wow...

I really don’t think they agree! Don’t know whether to bite my lip and continue or what!

Did they help your redness? My eyes are more red then burning

[Littlemisssunshine87 in reply to Martina93]

They should have told that they can take that long when they prescribed them. I don’t have much redness... my eyes cause me pain, uncomfort and light sensitivity. I’d say they make your eyes more red when you put them in. Do they sting a lot when you put them in?

[Martina93 in reply to Littlemisssunshine87]

She said trial tbf but i just don’t like them I’m gonna be honest.

I have 6/6 vision it’s mad.... sick of using steroids and drops!

I’ve had plugs put in but be redness is terrible... got people asking if I smoke weed or I’ve had a late night it’s awful.

[Littlemisssunshine87 in reply to Martina93]

There might be an alternative you could try? Give them a ring and see what she says. No good if you’re getting migraines x

[Foggyme]

Hi Martina93

I've been using Ikervis (ciclosporin) eye drops for nearly a year now and they've been a tremendous help. I also have an occasional course of steroid eye drops when eyes flare up again (no idea what triggers that).

I have extremely dry eyes (and all the symptoms that go with that) and started off with punctual plugs in the bottom ducts and hyloforte eye drops, then had punctual plugs inserted in the tops ducts too.

The Ikervis was added in when symptoms still persisted. It's an immunosuppressant drug and it took about three months before I felt the full benefit so it's unlikely that you'd feel any benefit so soon after starting them.

I was warned that they may sting for a few minutes when used, but they didn't...and I haven't had red eyes or any other noticeable side effects since using them (my red eyes related to dry eye symptoms have gone since using the Ikervis).

I've just checked the patient information leaflet (in with the Ikervis) and migraine/flushing hot cheeks isn't listed as a possible side effect...but irritation, redness of lids or eyes, blurred vision, swelling of the eyelid, eye irritation and eye pain are listed as possible common side effects (up to 1 in 10 people). Sometimes side effects occur initially and then settle when the body (or eyes) adjust to new medications.

Certainly worth discussing with your ophthalmologist if you think the drops are causing you problems - there will be other options that can be tried if Ikervis doesn't suit you...or rather, your eyes.

Also wondering if you use artificial tear drops as well? I need them in addition to the Ikervis otherwise the red eye, gritting, itchy feeling, and blurred vision returns.

Sorry you're having such a tough time...eye problems are just the pits!!

Hope you find some answers soon. Good luck x

P.s. if the red eye is 'new', worth checking to see if anything else is going on (infection, allergy, etc).

[Tykle]

I was on these for over four years after punctal plugs etc did little to help my dry eyes (Sjogren's) and found them very effective. I also needed to use artificial tears but my vision improved tremendously and my eyes were no longer gritty. Unfortunately, I developed an allergy to them, which showed itself as red bumps around the eye and eyelids and rough dry itchy skin at the corners of my eyes. I am awaiting a further appointment with the eye consultant to find out what happens next! I hope they aren't the cause of your problems as they really did work!

[Davjon64]

Hi Martina, I was initially prescribed Ikervis and Hyloforte and although they helped the dryness short-term my eye sight and general condition of my eyes continued to deteriorate. I was then prescribed with Optive Plus drops which offered some slight improvement. My eye Consultant suspected that my Lupus could possibly be hindering further progress and after a year I was offered Autologous eye drops (made from Serum from my own blood). I've now been using the "tears" for 2 years and the improvement has been amazing. I also use VitA-pos gel on a night, which is also excellent. The "tears" might not be available to you until they have tried other treatments (?) but it may atleast offer some hope.

[Hidden]

I also had terrible dry eyes. My eye specialist finally cauterized my lower eye ducts to keep some of my tears intact. It made a world of difference. Somedays I still have dry eyes but that is usually only in the morning, then after blinking or perhaps using drops I feel great. Most days I don't notice any lack of tears. I think cauterizing was a great rememdy in my situation. Perhaps it could help you too.