UK Keratoconus Self-Help and Support Association

I am 31 and have KC in both eyes, the left is quite advanced and I had epi-on crosslinking on it just over a year ago to try and stop it getting any worse, or it would not be possible to get a lens to sit on it. I have not been able to manage with glasses for a number of years now, as is common with KC.

In the last 6 weeks or so, I have had three occasions where i've woken up and found the white of the crosslinked eye very red, with varying sensitivity to light (on one occasion I couldn't open the curtains all day!). Each of the first two occasions cleared up on its own within 1-3 days without contact lens wear.

I saw the specialist who did my crosslinking for a planned check-up, which was about 3 weeks after the first occasion, and he said he could see no reason for it to have happened, and suggested that I may have just scratched the eye. He said the eye looked normal and healthy (as normal as an eye with KC anyway!), and that the KC seems to stable.

However as it then occurred a second time, I made an appointment to see my optician for a contact lens check, as it seemed a bit unlikely that I could have scratched the eye twice in such quick succession after around 10 years of contact lens wear (Rose K RGP lenses) without issue. I had not worn the lenses for any longer than usual the day before, or done anything different or unusual.

Ironically yesterday, the day of the appointment, it happened for a third time...no contact lens check then!!! However I kept the appointment anyway as something is obviously not quite as it should be. The optician looked at the eye and could also see no obvious reason for the redness and sensitivity...

She does not think it is related to the contact lens wear or dry eye, she said there is no evidence of conjunctivitus, and thinks it may possibly be scleritis. I am due to go back in a few days to see if it's cleared up (eye is still red today), and if a lens will go in.

Does anyone else have scleritis (or similar) and KC? Might the crosslinking have caused this? Having searched online, scleritis seems pretty rare, if that is what it turns out to be?

Sorry, a bit longwinded, but any advice/info gratefully received. If it is scleritis does this have any long term implications to KC and/or lens wear? My optician didn't really seem to want to go into it until she is sure that is what it is.

Many thanks

Hi Ian, sorry that something worrying brings you here.

As for the Scleritis, if that's what it is, then this seems as good a description as any of the condition:

http://en.wikipedia.org/wiki/Scleritis

Do the symptoms listed in the above all tie in exactly or partially with those which you're experiencing ? From what you've told us, it sounds like they do to a degree but unfortunately they are also very similar to the much more common conjunctivitis.

Only a professional -- and preferably an ophthalmologist rather than a generalist doctor -- can say exactly what's going on with your eye. I can't quite tell from what you've written whether you've been to an ophthalmologist who would be able to investigate the full range of possible eye problems and prescribe a treatment if indicated or an optometrist who looks after you lenses. The optometrist would almost certainly know a great deal about eye conditions but wouldn't be able to prescribe medication if this was what is required to resolve whatever is wrong.

So, I'd make getting yourself in front of an ophthalmologist a priority if you've not already done that. There's a few ways you can do this. One is to get an appointment with the clinic who performed your crosslinking, ask then to have a consultation with an ophthalmologist as part of your post-procedure aftercare and go from there. That would be the best thing to do. If that isn't possible for some reason, and really, they should offer to do this for you as part of the aftercare I'd expect them to offer as a matter of course, then you can go via your GP in Primary Care who will refer you to an ophthalmologist who does NHS work. Be prepared for a wait of a month to three months though, depending on the waiting list times in your area. Alternately, you can self-refer to an ophthalmologist who does private work (insurance, if you have any, might cover this but make sure you contact your insurer first as self-referrals are often not covered without good cause). Finally, you can go to an Eye Unit with an A&E (e.g. Moorfields if you're in the London area -- but there are others around the country). Of course, the niggle with that is that you'd have to drop everything and go straight away when you had another flare up.

Worse-worse case, and you can't get to see anyone for month and months, another (not very good) option is to rule out conjunctivitis by having a course of antibiotic such as Chloramphenicol. You GP could prescribe this for three or four weeks and if you didn't get a reoccurrence, this might suggest that it is bacterial conjunctivitis. The problem with that is that it would be purely speculative and Chloramphenicol isn't without some toxicity so a course of that length might not be desirable. So pretty much a last resort if you can't get an appointment with a specialist for ages and ages.

Just some ideas from an amateur though, what you really need as I say is to see someone who knows what they're doing ! I'm sure if anyone can offer anything more definitive, they'll be along to do so.

One immediate question for you though if I may -- what's the approach your optician is taking ? Seems like it is a case of "wait and see what happens" ? Or is there some specific course of action they've suggested ?

Take care, fingers crossed this all sorts itself out soon for you.

Chris

Hi Chris

Thanks for such a detailed reply. Yes, it is my optician (highstreet optician, with experience of KC) who i've seen about this to date. Until yesterday I thought it was probably just a potential problem with contact lens fit, but it just so happened I had a flare up yesterday so she could see it. She said there were no signs of it being conjuncivitus.

Yes, it does seem like a 'wait and see' approach from her, at least until the weekend. She did also say not to overly worry and start googling things......but when someone says that and gives you a potential name for something they think you may have, it's hard not to do....and then start worrying about it!!!

From what i've read online, it seems the general consensus is if scleritis is suspected you should go to your GP or A&E pretty much straight away, but this goes against what I have been advised...so i'm not sure what to do - go against what i've been told, or wait and see until the weekend. Other than seeing if it is any less red, i'm not sure what the appointment on Saturday is going to achieve regarding a longer term resolution, assuming it is scleritis, which is obviously unknown at present.

She did say if it gets worse between now and the weekend to go to my GP and ask to be referred, but I would say at the moment, it's about the same as yesterday. While I am sure the specialist who did my crosslinking would see me quite quickly (i've been back for a number of follow ups), i'm not overly keen on trying to get into London while the Olympics are on...

Thanks again

Ian

Hi Ian

"don't go Googling..." ha ! I know that the professionals mean the very best for us and they are probably quite right to say that our misguided attempts at DIY medicine is just going to get us worried without good cause but I'll file that one along with "don't eat that chocolate cake it'll make you fat" and "don't mix your drinks you'll regret it in the morning" -- excellent advice but a bit hard to actually follow in practice

Seriously though, it depends on how concerned you are and your mindset about what to do when things aren't right. Some people I know are totally unfazed about this sort of thing and will quite happily wait to have events unfold without being bothered at all. I'm not at all like that which probably shows in my reply.

The problems I had with waiting and seeing are:

a) in your situation, this had reoccurred three times. Even if this incidence goes away by itself, you're just waiting for the next time. Now, there might not be a next time, which would be great. But if there was, you're right back to where you are now. Also:

b) the ophthalmologist would, if you do get another occurrence, really need to examine your eye while the phenomena was flaring up. So if it is still ongoing now and you can get an appointment, or go to A&E, the chance to do that isn't wasted. Finally:

c) the psychological implications of living with uncertainty shouldn't in my opinion be underestimated. Living with Keratoconus is NOT easy. It chips away at you in little chunks day in, day out. Adding yet more pressure to your life isn't good and the best method of reducing it is to take reasonable action to alleviate legitimate concerns.

As I say though, it does depend on how you feel about things. If you're not as prone to fretting as I am and are happy to wait, please don't let me and my notions worry you.

Best wishes

Chris

Hi Chris

Thanks again for the advice/info. Went to GP yesterday who was sure it was not scleritis and prescribed some gloopy cream/ointment to put in eye at night.

Was back to optician today and the opinion seems to be it was diffuse episcleritis (much less serious than scleritis thankfully), but still a pain not being able to wear lenses, as unable to get to work or to read properly etc.

Fingers crossed it does not flare up again, but if it does, I am to report back for further investigation/medication.

Apparently no known link to KC or crosslinking though.

Ian

Hi Ian -- so glad that it wasn't anything really tricky like scleritis. Sounds like the GP thinks it'll respond to a course of either antibiotics or corticosteroids. As you say, not having access to our lenses makes you realise how dependent we are on them. It's a theme often covered here when people talk about applying for benefits such as Disability Living Allowance or being registered as partially sighted or blind. If I list my spectrum of visual acuity for example:

Unassisted: counting fingers, both eyes
RGP lens: N/A Left Eye so counting fingers again, 6/6-ish right eye. Lens tolerance time c. 6 hours on a good day
Glasses: 6/15 right eye 6/9-ish left eye

"part-time partially sighted" is the best description I've come across for how things are for us !

Hope you're back to being able to use your lenses again soon. Am sure it's a weight off your mind knowing it's nothing too serious.

Best wishes


Chris

Hi Ian,

I am an optometrist as well and can understand the reasoning behind what your optometrist is saying. She is more likely to see what is going on than your GP, as she has access to a slit lamp (the instrument with a bright light that she looks at when checking your contact lenses etc.). A slit lamp is simply a microscope designed to look at your cornea in high magnification.

If you had conjunctivitis, your eye would be producing large amounts of mucus. if you had something like iritis, this would be seen on slit lamp as white cells in the front chamber of your eye. Therefore, by process of elimination, your optometrist is thinking it is an inflammation of the sclera, the white of your eye. However, as you will have seen on googling, this is rare and often connected with general inflammatory conditions.

The issue with CXL is that we simply do not know all the possible consequences related to it. A patient of mine did have a similar problem but this was quite soon after CXL - not a year later. It turned out this was related to allergic reactions both to contact lens solutions and to other substances such as perfumes (such as found is air fresheners) and various aerosols. This did not happen with the other eye when it was subsequently cross linked. Even the ophthalmologist may not quite get a handle on this issue if he sees you in isolation. My advice would be to see your ophthalmologist with full input from your optometrist, who has had the advantage of seeing a flare up.

To try and help, may I ask what contact lens type you wear and what solutions you use? Is the redness completely over the white of the eye or concentrated more in one particular area?

If you want to read about my patient's experience you can read it here.

Hi Lynn

Thank you for your reply and information. The link to your patient's story was also interesting, thank you.

My lenses are Rose K RGP, and I use Bausch&Lomb Boston Cleaner and Bausch&Lomb Boston Conditioning Solution. I also use Allergan Refresh Contacts eye drops prior to inserting the lenses (and very occasionally during the day).

At it's worst, the redness seems to across the whole of the white of the eye (as far as I could see). As it went down, it seemed to be more towards one side of the eye, the side closer to my nose.

Since the flare ups, my optomotrist suggested using Systane UD Lubricant Eye Drops (although I believe they cannot be used while a lens is in the eye), and my GP has given me Lacri-Lube to put in the eye at night.

I did actually see an opthalmologist yesterday, who happens to be married to my optomotrist, so he had her full input! He does think it is diffuse episcleritis (not scleritis, which I understand is much more serious), although I do not have any other general inflammatory conditions.

I believe that it is not known what causes episcleritis to flare up, and there is no way of preventing it, but if it does flare up badly I can be referred for steroid drops, or it has been suggested Nurofen 250mg 3 times a day may help?

From what i've been told, episcleritis in itself is not a major concern, and if I did not need to wear contact lenses for satisfactory vision, thanks to my KC, it would not really be an issue. However it sounds as though I will just have to see how it goes

Thanks again for your input and suggestions.

Ian

Hi Ian,

You can use non preserved Systane with contact lenses - they are in single use vials.

If drying is seen to exacerbate the condition, then wearing RGP lenses may aggravate that, as you can get drying at the "3 and 9 o'clock" positions of the cornea when using these lenses.

Wearing a larger lens that covers the entire cornea may help reduce that. For example, wearing a thin soft lens may help in the short term to settle everything down, even if it doesn't give you perfect vision. Long term, there are many large lens types, both rigid and soft.

Lynn

Hi Lynn

Many thanks. I don't think drying is a significant problem for me at present from what I understand; my optometrist just commented that having the extra lubrication may help the eye settle down more quickly.

My GP prescribed the lacri-lube as he thought my problem was the eye drying out overnight, rather than episcleritis, but my optometrist said that while that is not the problem, using the lacri-lube will not have any negative effect, so I can continue to use it if I wish.

I had been wondering about other lens types for a while anyway, perhaps in the hope of getting increased wear time and have been trying to do some investigation, so I will approach the subject again when I next see my optometrist.

Thank you again for your replies and information/advice.

Ian