Giant papillary conjunctivitis-advice please?

[Balmy]

Hi.

I am new to this forum though I have known about my KC for ten years now and am looking for some advice/help please.

I attend my local hospital and wear RGB's which I have always had problems with but although seeing different people at the hospital they never offer any alternatives even when asked if there is anything else.

Recently I have been suffering particularly bad and was told I have Giant papillary conjunctivitis. I also apparently have dryish eyes and tight eyelids too

I was advised to not wear lenses for 6 weeks and use eye drops that he prescribed. I pointed out that I drive as part of my job ( long hours too ) and glasses dont bring me over the legal limit. So for the past 5 weeks I have been wearing just one lens in the least affected eye. Due to balance problems I cant ride my motorbike which has been extremely frustrating with the great weather we have been having. Anyway, today I decided to go for a ride with some friends expecting things to be ok or certainly much better but within 2-3 hours my eyes where sore-especially the eye that hasnt had a lenses in for weeks making me think that nothing has changed and it hasnt 'healed'.

I have a check up on wednesday but was wondering if anyone else suffers like this and what I should be telling the hospital. To be honest I am very upset and frustrated as I am finding it hard to do my job properly, never mind enjoy my leisure time. Any help/advise would be great.

Thanks

[rosemary johnson]

Hallo, welcome, and sorry to hear about all your problems.
hat eye drops were you prescribed for the dry eye problem? - there are people on here who use a variety of different types, and it seems it can be a case of trial and error to find the best one for each individual. There are also those who reckon the best thing for dry eyes is just to drink lots of water/juice to keep rehydrated, or to use plain saline not any special eye drops. Or to have spray guns to keep the air moist.
Maybe it is worth asking the hospital about alternatives?
Also, is it possible you've succumbed to the dreaded hay fever? - it seems to ahe arrived and come in WHOOOMPH!! this year, round here at least.
There certaily are a great variety of contact lens types for people with KC these days, not just the "ordinary" RP corneal lenses (about 8mm diameter) - some other designs in RGP matials, some special soft ones, some hydribs with part hard, part soft, and some people get good results from "piggybacking" - that is, wearing a hard lens (for vision correction) on top of an unpowered soft lens that acts as a cushion - and, oddly, some people get good results of doing it the other way round too.
It may be you'd need to go further afield to find the rght lens fitters, but there certainly are other options to try.
Hope you get it sorted out soon.
Roseamry

[Andrew MacLean]

Hello Balmy,

Welcome to the forum.

I guess the idea of juggling lenses to get over eye infections is familiar to most of us. Some cope pretty well, others struggle a bit. I hope things settle down soon.

Next time you go back to your optometrist, stress that you really are not tolderating RGP's any more. There are several alternatives out there.

All the best

Andrew

[Lynn White]

Balmy

Where are you situated and which is your local hospital?

Lynn

[Balmy]

Firstly, thanks for you replies.

The eye drops I have been prescribed are a ophthalmic suspension made by Allergan. I have been using this now for 6 weeks in the eye I am resting, 3 times a day.

I think my main concern was this conjunctivitis-it doesnt seem to be clearing up if sunday is anything to go by. I also worry that if I am at work and my right eye starts irratating I either have to suffer while I drive home or be stranded!! My boss so far ( new guy-been with the company 2 months! ) has been quite understanding but I really cant afford time off to rest them. Has anyone else had experience with this type on conjunctivitis?

I live near Newton Abbot and attend the outpatients at Torbay hospital in Torquay. They are ok but dont make life easy. I have had a split lenses before now and had to wait 3 months for a new one ( this has happened on more than one occasion ) How they expect you to manage with just one lenses....... I used to worry if anything happened to the one ok lens while you where waiting for replacements............. Not really good enough I dont think.

I have enquired in all the local optitians but none seem to have any experience in Keratoconus. One said he could get Kerasoft lenses but it would cost me £250+ to try them. Without knowning much about them I havent gone down that route yet.

[Matthew_]

I used to have these sort of problems with RGPs and always at this time of year. With me it was lack of tolerance to the lenses and hayfever. You're timing makes me think of hayfever but of course it could be co-incidence. I used to live in that neck of the woods and remember the pollen count being off the scale in the summer. Just one to check out. I ended up canning RGPs altogether.There are alternatives all with pros and cons which of course is where the experts come in. Is there an eye hospital at Torbay? If not, I think you need to get referred to one. If this an eye hospital, I think you need to articualte the need for alternative treatment if this going to be an ongoing thing. I stuck it for a couple of years but it became obvious spending most of summer with no sight correction just isn't going to work. Kerasoft Lenses for example might be a good compromise. And if you do have hayfever, you have get right on top it early in the season when you depend on lenses.

[Graeme Stevenson]

GPC can be a real problem for CL wearers and especially for KC sufferers. I suppose you need to look at the cause-Is it a hayfever reaction, a reaction to the CL's or perhaps even a bit of both.
It is in cases like this that health professionals sometimes break the rules of treating conditions such as this. It has to be done in a way that suits the individual and that both parties are comfortable with. Carefull and close monitoring is needed in such cases and the professional must be aware of the reliance of a KC sufferer on the CL's. Remember that GPC is an inflammation and not an infection so generally not regarded as sight threatening.
Have you tried looking for an Optometrist/Optician on this site who is local to you?

Graeme

[Anne Klepacz]

Hi Balmy
I developed GPC last year after more years of wearing contact lenses than I care to remember! In my case it seems to have been a reaction to the lenses (which hadn't been changed for quite a few years). I was prescribed 3 different lots of drops by my hospital (steroids, optanol and something else which I now can't remember). They also gave me a new pair of lenses. Within a few weeks, the GPC had cleared and my lens wearing time went up an extra 4 hours a day! So don't give up hope, but do go back to the hospital and tell them things aren't working. And do have a look at the 2 leaflets on KC at work on our home page. Access to Work can provide drivers to get people to work if they aren't able to drive. Quite a few of our members have had help from an excellent organisation called Action for Blind People (they deal with people with all sorts of sight problems). Your nearest branch would probably be Exeter - might be worth giving them a ring to talk about the problems with getting to work.
And if you're not already on our mailing list, do e-mail me anne@keratoconus-group.org.uk and I'll send you our latest conference DVD and other info.
All the best
Anne

[Balmy]

Once again, thanks for your replys.

Today has been mixed fortunes-my left eye IS improving though slowly-6 weeks without a lens in it seems to be working.

My right eye isnt getting any better so I was told I NEED to NOT wear lenses at all for a month (next appointment time)

I have more of the previous eye drops and a anti allargic one too. Apparently the GPC has been caused by the lenses-I have been using the ones with a soft skirt around them as I really couldnt get on with the tiny completly hard ones at first (back to the tight eye lids again! )

When the GPC has cleared up I will beable to try other lenses to find something more suitable.

Today I had complete sight tests, a Shermain test ( thing thats how you spell it) and a cornea scan. The cornea scan created pretty picture and the Shermain test was exactly as the nurse desribed-very uncomfortable!!! For those that dont know-they place a thin strip of paper under the eye lid-sticking out and see how much moisture it apsorbs. Its to test for dry eye and tear production-my left eye soaked the paper until it dripped down my cheek! Other eye seemed much better!

So, I was advised to get to an opticians as I was advised I should just be able to pass the legal limit for driving with glasses . So off I went to Vision Express who thankfull could fit me in within the hour. The opto had experience in KC, which was good. Anyway, he managed to get me to a standard to drive but then he said........ ( his EXACT words..... ) "You will be able to drive but things will bend and you will have problems with depth etc and because of the prescribtion you wil find then nigh on imposible to wear"

What choice do I have? I work in sales driving to different areas every day avaraging 200 miles a day. So I have ordered the glasses (£19 frames, £145 lenses ) and I can only see how I get on with them.

I will feedback how the glasses are when I get them on Saturday. Fingers crossed.........

[Andrew MacLean]

You will get used to the lenses in your specs: everything will be bent over for a bit and then your brain will adjust and things will go back to being the shape they always used to be.

All the best

Andrew