Cyclosporine

[Treesha]

I have primary sjogrens syndrome which is affecting my eyes terribly. I am now having to have my tear ducts permanently closed and I have been prescribed cyclosporine eye drops with steroid drops. The dr said the drops hurt for a few minutes with each use but the steroids will taper the discomfort. Has anyone had any experience with cyclosporine?

[whitedog]

I was thinking of posting on the glaucoma community as I've recently been prescribed cyclosporin as 'Ikervis' drops.

My RA has been in overdrive over the last few months to the point I was thinking I may also have Sjogren's as pain in some joints feels different to others. I'm starting Rixathon infusions in July.

Meanwhile I'm now under a corneal clinic as well as glaucoma. I have a primary uveitis disease and secondary glaucoma in my right eye. Dry eyes in both started about 2/3 years ago.

At the corneal clinic I was prescribed Ikervis around 2 weeks ago x 2 drops per day in my right eye. Previously they'd asked me to up the Pred steroid I use for my right to 4 times a day, then 3 and up the Hylo Forte to 8 times.

Now I'm back to x 1 for the steroid. First impressions with Ikervis are that it makes my eye feel gritty and a bit stingy. I can cope with that as I've got used to a lot of discomfort due to the uveitis. But, while it's only going in my right eye, which is blind, my vision has been quite blurred in my left, even if I block the tear duct in my right after putting it in. Yesterday it was blurred all day.

The consultant did say that it may take quite a few weeks to kick in but the blurry vision is driving me nuts. Have you experienced this?

I've had to stop working so not driving every day anymore but I can't drive at all if my vision's going to be blurry and/or hazy. I've emailed the hospital and asked if I can at least reduce the dose to x 1 per day. I didn't put any in last night or this morning. I'll put a drop in tonight and see what happens.

I'm really interested to hear your experiences with this stuff - or anyone else's.

[Treesha in reply to whitedog]

Thanks for replying I have yet to start with Ikervis as my local pharmacy couldn't get it so I'm trying Boots today, I have limited vision in my left eye so I'm worried about driving to work if blurry vision is an issue, I've been told to use it at night only. I've had more than 20 corneal ulcers per eye ( don't count anymore) but I'm hoping they dry eye improves as sometimes the eyelid dries onto my cornea which as you know is painful. I will let you know how I get on.

[whitedog in reply to Treesha]

My vision was blurred all day Saturday so I decided to not put any Ikervis in Sat pm or Sun am. Vision much clearer by Sun pm so I put a drop in again Sun night. Vision still OK this morning so have put another in and will see how today goes.

Have just got a reply from the hospital saying I can decrease to x 1 per day in the evening. That's a relief so fingers crossed. All the reports I've read say it can blur your vision straight after putting it in so seems odd to prescribe to anyone who drives or operates machinery etc twice per day.

Hope you get your prescription OK - those corneal ulcers must have been agony?

[bathouse]

Hello

I was prescribed Ikervis over a year ago, I also have plugs in my tear ducts which have been in since 2018

No issues at all with Ikervis, only positive effects.

I'm on one drop to both eyes morning and evening

The combination of these and putting my own finger prick blood in my eyes has helped so much, yes, sounds very weird but Moorfields eye hospital trialed the blood in the eyes, it’s much better than drops, administer daily without fail.

Hope this helps

Kind regards

Sue

[Treesha in reply to bathouse]

Wow that's an amazing story, glad it's working for you, I think I would prefer blood to drops sounds more natural x

[bathouse in reply to Treesha]

Do ask for a trial on the treatment x

[Madmusiclover]

I just have ciclosporine once a day. Probs been using them for 9 months or so. The stingyness is much better. Not sure it is improving things much. On a bad day can’t stop my eyes being dry no matter how much lubricant I pour in!

[Treesha in reply to Madmusiclover]

Dry eye sounds like nothing to those who do not suffer from it, but it can be quite debilitating, hope things improve for you x

[Lizard28]

I found getting the plugs in a game changer for me, I only have to use drops at night now.

[Madmusiclover in reply to Lizard28]

Pleased for you. Eye duct drainage surgery from years ago means I can’t wear the plugs. Discussed cauterisation but nurse says may or may not work.

[Lizard28 in reply to Madmusiclover]

That’s a pity Madmusiclover, I hope they find something to help you, there is nothing worse than having eye problems. Best wishes x

[Madmusiclover in reply to Lizard28]

Apparently this is as good as it gets for now…

[Jig-saw]

Hello Treesha, I’m currently on Ikervis taken at night, I also take prednisone eye drops in the morning alongside a Doxycycline capsule.

I have had no stinging or other side effects, I also use Optive fusion eye drops leaving a gap of at least 15 minutes after taking the above eye drops, I also use a heated eye mask (which I purchased after asking if there was anything I could do that might help) don’t know if it helps but it’s a nice treat.

Last year I had a course of prednisone for both eyes and had some stinging but I prefer the eye drops to having my eyes dilated with those yellow drops.

I do hope you get on with them.

[whitedog in reply to Jig-saw]

Heat masks are good, though I have to push myself to go through the procedure! My favourite one is the Blepha Bag as the contents are quite fine so it nestles itself onto your eyes. Only gripe is the lack of a strap so I bought some headbands.

I tried the Eye Doctor one as it had a strap but felt more like bags of grit, though I use their wipes after massaging as cheaper than others

Also have a USB one but it stopped heating up properly after a while.

[rawillbebeaten]

I have secondary Sjogren's and Primary severe Sero Positive RA. The dry eyes, and an RA flare gave me a couple of serious eye issues and the vision in my left eye is comprimised. I've had my tear ducts sealed twice, they opened up after a while after the 1st time. Since using Cyclosporine, Ikevis drops, I haven't had any further issues. It sometimes stings a bit but I know it's working, so accept it. Cyclosporine worked well for me as a drug, but I had to stop that and my first Biological due to kidney issues. I only use it at night and haven't noticed any blearyness. I use Hylo Night in my eyes when I have a shower, to stop/protect from any shampoo getting in. My eyes are blurry after that. I also use Celuvisc 1%, Theolose Duo and Eye Lube. If my eyes are uncomfortable and I use a lot then I do get some blurriness, blinking and maybe a few minustes with eyes shut helps. Also Mebopatch, eye untit recommended heated eyemask, if they feel gritty. It releases the build up of natural oils that can clog up the eyes. It's a constant challenge. I never go outside without sunglasses that give good eye coverage, and in the winter/at night, light clear safety glasses to stop wind or dust getting in. My eyes are so dry and sensitive. I've learnt over time which drops to use when and I take no chances that anything could blow in, I avoid being close to fans or air con as my eyes react. I can totally empathise with your sistuation, I hope things settle down for you and you find a workable combination that suits you. Like RA everything is so individual. Michele

[Kags1068 in reply to rawillbebeaten]

Hi

Hope you don't mind me replying! I'm in a similar(ish) position severe sero positive RA (JIA) and secondary sjogrens. I've had ongoing serious eye complications for the last 30 years. I'm very pleased you can tolerate Cyclosporin drops, and that they help. I've tried them in various formulations over the last 30 years, but just can't tolerate them. I also use Ilube and have done on and off for about 30 years as well. Not many people seem to get prescribed Ilube, although I've no idea why as I've found it helpful. I also use the usual lubricating drops (every 10-15 mins), ointment at night, plus blood serum eye drops which have been very helpful. Unfortunately after having to use steroid drops for about 30 years as well, I've developed a kind of glaucoma. I noticed you used to be on oral Cyclosporin. How long were you able to tolerate it? I'm on that too, and have been (yes, yet again 🙄) for about 30 years. It was the only thing that seemed to have any effect on my eye inflammation. It was prescribed by Moorfields initially. It has caused kidney issues. I think I have an eGFR in the low 60's which I understand translates to stage 3 CKD. I'm not entirely certain I fully understand that! Is that a similar issue that you had with the medication?

Like you I find heated eye masks helpful, and try to avoid air con, fans, windy weather and all those inconveniences!

Hope you don't mind me asking! As you say, things are so individual when it comes to RA, so when you see a similar(ish) situation it resonates.

Hope you are keeping well.

Best wishes😊

[rawillbebeaten in reply to Kags1068]

Hello, Good to hear from you. I think I was on oral Cyclosporin for about 10 years. Everything was very settled, then the Rhumatology consultant became concerned about my kidney function, I'm not sure of the details just that it gradually got less. Not damaging but he wanted to act quickly to prevent that. Since then it's been a roller coaster of issues, new drugs, side effects etc etc, all the joys we all experience! I've not heard of blood serum drops, I've seen that on a couple for posts replying to Treesa. Apart from when I had the actual eye issues, corneal ulcer then a year or so later a Corneal melt I haven't used Steroid drops. I am on a low dose, 3mg, of Prednisolone, I've been on steroids of varying amounts for over 20 years, since diagnosis. I was down to 2mg, upped a bit when I had to come off Humira in Oct, settled on 3mg until the new drug is fuully working, if it does. Interesting to hear from someone with similar issues and experiences. Hope you are generally doing well. Michele

[Kags1068 in reply to rawillbebeaten]

Hi again

Sorry it's taken a few days to reply - thanks for your response. It's a shame you hadto stop the Cyclosporin if it was helping, but I certainly appreciate your rheumatologist being so careful. I don't think my fuction will improve, it's just monitored to check for deterioration. I think ideally they'd like to swap the Cyclosporin to Mycophenolate (Moorfields have tentatively agreed), but I've been having a number of other issues/complications from other bits, so it's on hold for now. They don't seem to use Cyclosporin orally very much now. I'm the only patient my rheumatologist has on it. The blood serum drops aren't the same as the blood finger prick drops mentioned in another reply. The serum drops are made out of either yours, or donated blood which is turned into a clear serum eye drop. Moorfields put me onto those about 6-7 years ago - alongside all the other existing drops, etc.

Interesting to hear you experienced a corneal melt as that's been my repeated issue and I know it's not very common. I hope yours didn't perforate, and your cornea remained safe. Unfortunately, mine kept perforating necessitating corneal transplants that then melted and perforated.

I'm glad you're not currently having to use steroid drops, and your oral steroid dose is low.

30 years of oral steroids (currently 13mg) have caused me a number of problems, so the lower a dose anyone can have the better, although we know that for some of us they are a necessary evil.

I was on Humira for for about 13 years until about 18 months ago. It just stopped being so effective. Hope they've been able to decide on a new biologic for you. I know some aren't necessarily recommended for people with our kind of eye issues. Moorfields initially (in 2007) recommended Infliximab, then Humira. TNF's generally seem ok. They also ok'd Tocilizumab (can't have for other reasons), and Rituximab (had started this but can't have any more due to other complications)🙄 I'm about to start Filogitinib which I haven't had chance to discuss with Moorfields- my local eye consultant doesn't know anything about JAKs. I'm not sure they have enough data yet on JAKs and eyes. Anyway, I guess I'll see what happens (or not)!

I hope your new treatment works.

Best wishes 😊

[Bailybiscuit]

I have Sjogrens and it affects my eyes very badly. I also have Glaucoma and I have been on Ikervis about 2 years. Some day my eyes sting and others not. I feel if it is a good day with no wind it makes them sting and my eyes and nose run. I'm not sure it helps as on a bad day my eyes couldn't be worse, if the wind direction changes or if the wind stops they can improve very fast. No eye Dr believes when I tell them that and on the rare occasion I have seen them I .ostly have good eyes,even if the next day it is back to being their worst.I can no longer find eye drops that help on bad days and on good days most will work.

[DJK99]

Hello.

I have yet to get to cyclosporine.. probably will if it continues to get worse... but yes, I had my tear ducts done too, after the plugs didn't work, which is what they wanted to do prior to the cyclosporine. The cauterised tear ducts helped a little, although wasn't a lot of fun, of course. Do take some codeine and paracetamol prior.. and if you need a low dose of something prior such as diazepam, get this from your GP.

Can I ask how much water you drink a day? I drink about 3 - 4 litres a day (on top of herbal teas) and it really helps, along with the many applications of Carbomer (Hylo Forte etc brands) through the day and then just before I turn the light out, followed by an application of Hylo Night ointment and the carbomer through the night when the lids stick to my eye balls. I found having a humidifier in the bedroom and other places I spend a lot of time really helps. Or just bowls of water on top of radiators in the winter. And plants that need a lot of water..

Sorry can't answer your main question but hope this helped. All the best to you. D

[Kags1068]

Hi Treesha

Sorry to hear you are experiencing this problem with your eyes. I developed JIA (Juvenile Rheumatoid) 41 years ago when I was 14. About 5 years later I was also diagnosed with secondary sjogrens. When I was 24, I had a really bad flare of the sjogrens/JIA resulting in corneal ulcers. Unfortunately, I suffered an (apparently) rare complication called rheumatoid/corneal melt. The ulcer caused my cornea to thin, and then it perforated. I had to have a corneal transplant. It didn't settle and they could not get the inflammation under control. The transplant rejected, and perforated again. At this point I was referred to Moorfields eventhough I live in the Midlands. To cut a long tale shorter, no-one could get on top of the inflammation and I ended up having 4 transplants in just under 4 years. There were many other complications too. Again, don't worry as I'm still repeatedly told how rare this situation is. Finally as the 4th graft was about to perforate I hadto have something called a gunderson/conjunctival flap. It means the conjunctiva is cut and pulled up over the eye to form a protective cover. There is no sight afterwards - not even light perception. It did however enable me to keep my eye. I'm now 55, and still have the flap (and eye), although it has ongoing problems.

Moorfields were just starting to trial topical Cyclosporin in 1994 when I was referred. Initially it was an off label product as it was veterinary ointment. Then for a time they formulated their own drops. Eventually Ikervis was marketed many years later. If you can tolerate the drops, they can work very well and act as a steroid sparing agent which is excellent as for some of us, steroid drops raise eye pressure and cause a type of glaucoma. The ikervis take about 6 weeks to take full effect. Unfortunately after so many drops for so many years, my eyes are very sensitive. I've never been able to tolerate any formulation of topical Cyclosporin and I've tried many times. Last year, I re-tried the Cyclosporin veterinary ointment as it's meant to be a bit more gentle, but it makes my eyes and eyelids burn, and my eyelids swell. I was also once given something called Protopic (a version of tacrolimus) ointment to try off label too. Normally it's a dermatological treatment. Sometimes people who can't tolerate ikervis can tolerate this. Again, not for me - I wish it had been! The thing that did help was taking Cyclosporin as an oral medication for the last 30 years. Obviously more invasive than topical drops, but sometimes needs must and all that. 🙄

I've also had the punctal plugs a few times in my tear ducts, plus eventually had them cauterised, as the plugs kept falling out. It's a minor procedure and certainly worth trying. As long as you still produce some tears, it could well be beneficial.

I do want to make clear that although the ikervis and it's variants haven't been successful for me, as I've explained there are long-term unusual complications as to why. It can be an excellent treatment, although you do have to persevere. I've mentioned the ointment version of Cyclosporin and the protopic (if your eye hospital will prescribe) as possible alternatives if you find you really can't get on with the Ikervis.

I wish you the best of luck - I'm well aware how miserable and painful corneal ulcers are! 😡

Best wishes 😊