UK Keratoconus Self-Help and Support Association

I have been trying my Scleral lenses for a while now, and my eyes are getting really sore.
The rims are red and itghy and crusty. They itch alll the time.
The itching gets worse when the lenses are in and i am thinking maybe i need something for dry eyes but do i use it with lenses in?

I am concered about this as i am worried my eyes will flare up out of control like they have before and have had to use oral steriods to calm it down.

The ghosting is still just as bad, and i not sure wether i should put them in today. Maybe i should see my GP.

I wish i could make a decision

Go back to the ophthalmology emergency clinic. If you can bear it, wear your scleral so that they see your problem. Otherwise, just explain to them what you have been experiencing. I can see no particular merit in continuing to put yourself through all this discomfort.

Andrew

Hi Anne,

The rule of thumb I go by is that if my eyes are red and sore then no lenses to allow my eye to recover. My reason for this is that and broken skin is a potential source of infection which I wish to avoid, mainly because of my grafts and secondly I would much rather go a few days unsighted than a couple of weeks treating an infection and possibly having to wait for new lenses too.

When we have spoken in the past, you have mentioned exzema so rather tham my usual advice I think it would be best for you to call your GP or dare I suggest it Moorfields.

I have found Systane by Alcon is ideal for dry/sore eyes due to elns wear however you need to put the drops in with the lenses out otherwise you form a greasy film over the lens making it hard to see. What you need is the drops to form a protective film over the cornea and eye lids. This works for me as a non-scleral wearer but I know others where it does not.

If you decide to try Systane (I can send you a bottle as I have plenty), start without the lenses in to give they eye a chance to recover. When I started using them I found a drop in each eye every couple of hours was necessary, but after a month I could start to back this off and afetr 3 months only needed the drops morning and night. A few days after first starting the drops I was wearing lenses again and noticed an instant comfort improvement. The inconvenience factor was woth it having to take lenses out every couple hours to put drops in and then my lenses back in.

What lens solutions are you using now?

What if any were the side effects to using the solutions you sent me?

What sort of saline are you using; preserved or preservative free?

Hope this helps.

Gareth

I have just called my GP and she is going to call me back, hopefully i will get to see her later and she can advise me more.

The solutions i am using are
Sauflon preservative free daily cleaner
Amo Ocupure saline [for rinsing lenses]
Ami-dose sterile saline [to fill the lenses]

I didn't have any side affects from the stuff i sent you, i just didn't need it.

I wil try systane, i will try to get some locally if i can't i will PM you.

I have been to the doctors and he has given me some antibiotic drops to try.
Lets hope they work!! No lenses for a few days (can't say i'm sad )

Anne

All the best Anne

Andrew

I know i have been here before and i am a whingey old cow, but i just have had enough.

I think that maybe i should give up on the whole KC thing and live as i am now.
All the hope and then it not working has finally got me down.
I just don't seem to move forwards.
I have looked after the kids for six weeks non stop and i feel so drained.
All the trips to London and hubby having to take days off work and sorting out child care is just a nightmare.

I am meant to be going away tommorow with friends and my two girls but i just don't want to go, i just can't enjoy myself. I feel like i can't look after them properly outside of the home.

everyone keeps on asking me about my graft and i have to tell them it has been cancelled.
and go through everything.

Sorry to go on but i just want to let my feelings out
I wish you could all pop round for a cup of tea and a chat!:)

Cup of tea and a chat sounds lovely. I prefer my tea: Earl Grey, hot!

In fact I'm just going off to pop the kettle on.

Meantime I am sure we all know exactly what its like to be in that place.

Two things: let your husband support you, and let him take a share in looking after the children, even if it does mean that he is taking days off work. He will cherish the time with your children especially when it is also a support to you as you make your way through good and bad eye days.

Secondly, just because you have suffered another setback does not mean that the road so far has brought you nowhere.

I only drink Earl Grey or Darjeeling!

What i am trying to say is that for about two years before i was diagnosed with KC i lived just thinking i was going blind.
Although it was nice to have a diagnosis All the trips to Moorfields and the decisions i have to make were not there and i was quiet happy.
So was i better off then, not knowing?

My husband is fantastic and supports me. But he does have to earn the money to support us all, and he does work really hard. So having time off is not always easy.

I also have been diagnosed with something else that requires surgery and a 6 weeks recovery period, and i haven't a clue when i am going to fit it in!

I am just feeling so fed up, I just needed someone to talk too.

Anne, go away tomorrow.

I often find that when I go somewhere when I am not in the mood I unexpectedly have a good time. Perhaps getting out of your routine will help.

Take care .