UK Keratoconus Self-Help and Support Association

Hi All

Can anybody help me with some advice?

I have been unable to wear my lenses since August and after seeing my consultant I have been on steriod drops for atopic conjunctivitus ever since. I have been back to see him and and things are getting better and was told to try my lenses again. In the space of about 2 weeks I managed to get the wear upto 40 minutes before they start to hurt.

Since I was diagnosed I have tried a number of different lenses - RGP's (which needed changing about every 3-4 months), then I went onto piggy back then on to the Kerasoft.
My optician had to change from RGP's because they didn't sit central, and were getting painful, as I have 2 "hot spots" in one eye and 3 in the other which makes the fitting difficult.

Went back to the opticians yesterday and in case it is the kerasoft causing the inflamation he wants to change my lenses but I'm not really sure which he wants to try next as the RGP's don't work.

Has anyone any suggestions?

Thanks Kathy

I use Rose K and after the usual initial couple of weeks I found them so comfortable that I forget I have them in.
The only one prblem I have is mixing up right and left, but now my prescription has changed I have had the lenses colour coded Blue for Left and Grey for Right

Hi Kathy

Sorry to hear of your problems.

I see you have tried piggybacking, obviously without success. If it helps, after 40 years contact lens wear and a recent complete intolerance to RGP's and Rose-K's, I have had amazing success with piggybacks but only after I changed to daily disposable soft lenses ( my tolerance went from 30 mins daily to 12 + hours overnight ) plus the use of Systane hydrating drops.

For me the difference is huge, particularly with the drops - I "forgot" them for a couple of days recently and could not believe the diffence in comfort and vision - if you want more info please let me know.

Good luck

Thanks!!

At the min I a also using carbomer 980 (viscotears) 3-4 times a day which was what my new consultant prescribed instead of the ususal minims artificial tears prescribed earlier.

The main problem is that I don't have one ridge (or hot spot per eye). I have 2 in one eye and 3 in the other, that is the problem my optician is having.

My consultant has mentioned the intacks op before but where I live it is only available privately,

kathy x

Hi Katherine,

I appreciate the problem you have with comfortable lens fit, the eye I have trouble with, there are 4 distinct points of distortion in my field of view. In addition to the scar around the cornea where I have had a graft and the KC at the corneal marging has meant monthly visits for the last six months.

For comfort I have to experiemnt with different lens solutiions that really helped and then experimented with different lubricating eye drops. Systane is the best for me, but the lens moves from the comfortable off centre pointing to my nose which gives best vision and best comfort. Throughout the day the lens migrates up and across the eye.

I have been told that the vision might be the best we can get and perhaps I should reconsider trying to get 6/6 vision in that eye. Decided to ask further about eye drops and now using Systane every three hours and taking the lens out to put the drops in although in convenient is working. Only problem with Christmas the new stock of eye drops has yet to arrive, have not found anyone in the Midlands that stock Systane whic means much of Christmas is going to be more of a blur than usual.

Systane does have fast results, but when used over time it appears to have a cumulative effect to make lens wear more comfortable. It would appear that I am deficient in the lubricating component of tears.

I do have one question, when the lenses cause discomfort, is the irritiation on the eye lid or the cornea?

Regards

Gareth

Hi Gareth

I would have to say that the discomfort is more cornea than lid. When my lenses are in they sting and when I take them out I get pain in my eyes, and seen as I am only up to 40 mins wear I don't think that is right. Before I got the inflamation I could cope with 10 hours + depending on what I had done on a day to day basis.

Have you any experience on the intacks? When I have spoken to my consultant and my optician nobody will give me definate answer, whether that is because it is a private op I don't know but I don't know what to do. I want to go back to work but whether I can go back to doing the job I did I don't know.

I went to my works xmas do the other week and apart from the senior staff collegues ignored me and I don't know whether I can go back to that kind of environment. I have been off work since August and I thought they thought more of me than that. It might be me reading more into it but I don't know.

Kathy x

hi
i am new to this forum briefly 8 years ago transplant in right eye 5 years ago in left.i piggyback and have tried nearly all the new silicon hydrogel lenses on the market.i am now trying a 30 day lens from cooper vision which is fantastic the proclear compatable lens i recommend to everyone who has a problem wearing contact lenses to ask their optician about it
merry christmas to you all
Malcolm

Hi Kathy,

Sounds like you have more than a fit problem.

It took me time to find the right drops, which means I can get descent wear time.

I wounder if there is an oxygen transfer through the lens that can make things uncomfortable.

Many here would say to overcome the fit, a sclearl lens would be better as depending on the scleral design, it can be made so it does not touch the cornea. I have heard the visual aquity is not as good, but with glasses on top they are very comfortable and the aquity then becomes excellent.

Gareth

Hi all

Just a quick up date.

My optician is still trying to find lenses that fit. The pair he has tried hurt like hell!

I did ask him what my options are if he can't find any to fit and he said "intacs". Thats the first time I have been told that it is possibly the best option.

I waiting for another pair to come and try those - fingers crossed, I want to get back to work!!

Kathy

That's possibly the iirst time that I've heard of Intacs being mentioned by an Optician rather than by a knowing patient! You must have a good Optom!

Do you go to a hospital clinic or a high-street opticians?