UK Keratoconus Self-Help and Support Association

Hiya

As many of my previous posts have indicated i have recently had a lot of problems with my eyes, hospitals cancelling and the KC CL fitter at my opticians being off with a broken arm. Well some things are looking up;

The experienced KC CL fitter is back and saw me last week and also this morning. Last week was a check up on the fit of the Synergise lenses that i have only been to wear for a couple of hours per day since february. She confirmed that the fit was wrong for the right eye (recently diagnosed KC) and i went back this mornng for a re-fit. The best fit in my left eye is unchanged from what i currently have. She has reordered me the new fitting for my right eye, but we also had a discussion that due to the dry eye i am suffering with badly - also reducing my wear time - to look at other alternatives. These were piggy backing (already tried and not worked) or So Clear Sceral lenses (she has only just started fitting these lenses - 2 people so far).
Has anyone tried/got these lenses, and what are your thoughts about them?
What is your average wear time (I know each person is different )?
How do they stand up to activities and the wind?
Can i swim in them or not?
What differences, if any, can i expect to get to my current Synergise lenses (RGP centre, with soft outer flange) - have seen both the Synergise and So Clear lenses next to each other and there isnt much difference in size, just the thickness.
Is it easy or not to lose the lenses - for example she put one of the So Clear in my eye today and when i took it out it bounced off the mirror onto the floor

I am quite happy to give them a go (if the new fit Syenergises dont work), as i am really starting to struggle with just glasses and want to be able to see clearly for more than a couple of hours each evening - wearing CL at work currently does not happen due to the amount of time/work that is done on the computer and the dryness increases (even on the computer at home i suffer when wearing CL so it isnt just the work enviroment).

I am hoping that my next hospital appointment doesnt get cancelled/postponed a 3rd time, and i am still looking into having CXL privately with a view to the fact that i can currently manage with glassess when my eyes are really bad, so if i can slow the progression of KC in my right eye down substantially then i have more chance for the future.

Unable to help on the sclerlas but I am cureous to know what treatment are you getting for the dry eyes?

Without treatment for dry eyes my RGP lens wear was a couple hours max but after treatment this increased to 12 hours most days. Since maintaining the dry eye treatment and using soft lenses for Keratoconus this is now all my waking hours in lenses.

I know we are all diferent but most the times eye drops manages my dry eyes and in bad periods anti histamines help to.

I am currently using Clinatas Soothe when wearing my CL and also Viscotears (really thick goopy drops that blur my vision when i first put them in) when going bed or not wearing CL. When not at work/using a computer i can usually get 4-5 hours with using the Clinatas before my eyes go red, when in work if i make 2 hours when using the Clinatas i am lucky.
The hospital consultant prescribed me Celluvise 0.5% which lasted no time at all, and the CL fitters i have seen since recommended using the Clinatas Soothe initially then progressed onto the Clinatas and Vioscotears when i wasnt get much relief from just Clinatas. I do find that when not using the eyedrops i get even more reduced weartime from my lenses, so use them constantly - friends find it quite funny when i manage to get out on the bike in my lenses and then put my drops in after putting the helmet back on
I have to take anti-histamines all year round to manage my other allergies - cat/dust as well as normal pollen based allergies.

I also drink somewhere in the region of 2-3 litres or water per day, so i know i am not getting dehrydrated and i also dont drink caffeine any more (dry eye has gotten better than it was since stopping drinking caffeine as well).
Any other ideas for eliminating dry eye are also very welcome.

Sorry, never full appreciated your dry eyes were that bad

Hope the lenses work.

I find too that I can only use specific lens solutions and even then I can't use the wetting solution or saline when I put my lenses in. Instead I need to rinse the conditioning solution off with plent of preservative free saline for sensitive eyes and put a drop of Systane in the lens before I put it in. That's after a coupe of drops have gone directly in my eye first thing in the morning. I had to do this for my RGP lenses too, never found a solution that does not bring on the symptoms of dry eyes.

Systane was the first eye drops I found that gave me relief, Viscotears did nothing I don't think Clinatas was available 2 - 3 years ago.

Its only in the last few months that i have noticed that my eyes have gotten really bad. Ive always suffered with itchy eyes but never where they are as sore and itchy as they are currently - would help if the hospital didnt keep cancelling my appointments so i oculd get some more advice about them.

When i first tried CL i couldnt get on with them at all due to the reaction i had with the solutions, and as i could manage with glasses i gave up. it was only 18 months ago where i have started struggling with glasses i tried CL again. this time i was given preservative free solutions which i generally get on with but obviously not fantastically well now if it is aggravating my dry eye. Must admit to when i was away i didnt bother with my CL and my eyes felt great - just couldnt see much

when putting my CL in I always put clinatas in each eye about 5 minutes before my lenses, then fill each lens with clinatas before inserting them. does help but not for that long.

I have no idea how advanced your KC is but your optom might want to consider trying you with one of the soft lens options for KC in addition to sclerals, it might give you more avenues to explore?

Hi Lizb
These are the lenses I acted as a guinea pig for last week (see the thread on training workshops). I've only had them in my eyes for 10 mins, so can't answer your questions but do let us know how you get on with them.
Anne

truthfully i dont know how advanced my KC is either Left eye is certainly worse than the right, but whenever i ask the question i never get a straight answer from the hospital (another story). It is certainly something to bear in mind for the future.