Does any one have immunosuppressant eye drops for dry eyes and if so do they work? I have had an uncomfortable eye for several years which I am assured is dry eyes. I get told always, it's dry eyes, put drops in.
I have tried practically all over the counter drops, plus endless flavour of the month from ophthalmologists. Not a single one has ever given me any relief even though I always use them for at least a month, usually more.
I have asked to try immunosuppressant drops but no-one will prescribe them, I suspect because they know little or nothing about scleroderma or the drops.
I would like to know about other people's experiences, before I completely give up and accept I've just got to live with the discomfort.
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I use viscotears three times a day these are not immuno suppressant but they do help they did offer me an operation but I declined as some risks involved and they Said my eyes would potentially run continuously I didn’t fancy that
Ikervis drops are used for severe dry eye in Sjogren’s - which is fairly commonly associated with systemic sclerosis as I’m sure you know. Having SSc would not be a reason not to be prescribed them. Unfortunately they are expensive and ophthalmologists tend to save them for people whose eye surfaces are already showing early damage due to the 3 types of dry eye disease associated with Sjogren’s. Like you I’ve had various drops and got plugs and find for me Hylo Night ointment and 2-3 grams Mycophenolate have been enough to improve things. However I was also told by one eye specialist that sometimes we feel our eyes to be much dryer than they are and for others times it’s other way round. So I keep up my yearly eye clinic appointments and yearly Specsavers too.
Why don’t you ask the ophthalmologist for a trial of Ikervis eye drops and see what they say in reply?
Maybe this means your eyes feel v dry still to you but aren’t showing signs of corneal erosion - same as mine. It’s v expensive treatment as I’ve said so if they felt your issue was severe enough then they would offer the immunosuppressant drops. I hate the idea that our eyes have to become damaged to qualify but this is how it is these days I’m afraid
I hadn’t heard of immunosuppressant eye drops before. I get very dry gritty feeling eyes, but they water a lot. My optician said this is common with dry eyes and suggested Hycosan eye drops three times a day. They have helped, but the recent high pollen hasn’t helped.
I have 2 kinds of drops, Clinitas Carbomer gel and Vismed multi lubricant eye drops. They won’t get rid of my dry eyes but they do give relief and make things more comfortable. It is something unfortunately that I’ve had to accept as part of my ongoing disease process.
Hi. The advice of my opthalmic specialist: it is essential to have eye drops which are preservative free. The labelling must state this. I once was mistakenly prescribed eye drops containing preservative, with awful, painful effects. If your eyes are very dry, or to get it under control initially, Hylo Night should also be used in the morning ( the eye's dry out during sleep), or at any time when you can sit for a while,. It takes time to be absorbed and you can't see clearly for up to half an hour, but really works for me. I have high titre Sjogren's as well as other autoimmune diseases. Good luck.
This reply is going to be long, so apologies in advance. I’m another who was prescribed drops that caused me huge discomfort, but have since used Ikervis with great success, although it was used in conjunction with other drops.
Just over 18 months ago I went for my annual eye test thinking that I needed a stronger prescription as I was having difficulty reading and my eyes had been feeling gritty and uncomfortable for some time, I was always rubbing them and there was a constant pus like discharge in the corners.
The eye test showed that my prescription hadn’t changed at all but the optician wasn’t happy with what he could see and asked a more senior colleague to review me.
The first thing he remarked upon was how dry my eyes were and he questioned whether I was taking any medication and if I was experiencing any other issues. When I told him that for years I have suffered with joint pains, muscle aches, raynauds and an intermittent dry mouth, and that at one point I was under the care of a rheumatologist who decided to discharge me without a diagnosis despite auto immune blood markers always being positive, he asked whether Sjorgens had ever been mentioned and suggested it would be worth me seeking another referral as my corneas were now showing evidence of damage as a result of dry eyes.
Because of this damage he referred me to the Ophthalmology clinic and prescribed a course of antibiotic eye ointment in the hope it would help clear the pus like discharge. It didn’t and I was eventually seen by a Consultant Ophthalmologist at my local hospital a couple of months later.
The consultant confirmed damage to my corneas and initially prescribed something called Maxitrol to be used twice a day in both eyes for 2 weeks together with sodium hyaluronate drops 6 times a day and warm lid massage morning a night. One of the drops ( and I would think it was the Maxitrol as the other was clearly marked as preservative free) caused the most horrendous reaction and I had to return to the hospital as an emergency.
I was seen by a different Opthalmologist who prescribed something called Softacort to be used 4 times daily for 4 weeks, then 2 times daily for 2 weeks along with Ikervis Cyclosporin each night and Thealozduo drops 6 times daily. Apart from him emphasising that it was absolutely essential that I kept my eyes lubricated continually during the day I was given no indication as to how long I should continue with the Softacort and the Ikervis so when I had used the prescription issued by the hospital my GP issued a repeat and by the time I had finished this my eyes felt significantly more comfortable and continue to do so providing I use the lubricating drops every couple of hours.
I had a follow up appointment at the hospital 2 months later and am now just using Thealoz duo drops 6 times a day. I was also prescribed Xailin to use before bed for night time relief and advised to use a heat mask at least a couple of times a week. I gave up using the Xailin pretty quickly as I found it hard to administer and now just pop in some more Thealoz before going to sleep and if I wake in the night.
Needless to say well over 12 months have now passed since I asked my GP to refer me back to Rheumatology and although I’ve received confirmation that I’m on the list I’m still waiting for an appointment. Being honest I’m not sure what benefit there will be should tests show I have Sjorgens but I suppose it’s good to know these things
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