UK Keratoconus Self-Help and Support Association

I went to see the doctors about my Chronic Dry Eye.

Walked in, told her I had KC. Said I work in a hot warm office staring at a warm computer screen, then come home to a warm house, and sometimes my eyes feel like crisp packets they are so dry!

She said she hadn't heard of KC until the other week when someone came in and couldn't see. She said what had the Optometrist said, had they recommended anything? I said general OTC eye drops, which I have been using but they don't last very long.

She flicked through a book, said she didn't really know what to suggest and best to ask my Optometrist. She picked viscotears out of the book, said it's what old people use (i'm not old) but said to not hold out too much hope!!! lol

I have been trying Celluvisc and Lacrilube, but didn't mention these as I didn't want to lead her, she is the doctor afterall, but she didn't seem to have a clue!!

Should I go back again and ask for a repeat prescription for celluvisc? I didn't want to tell her what to prescribe, afterall she is the doctor! It would be easier to phone it through than waste my time sitting in a waiting room only to go "give me a repeat prescription for Celluvisc please"

lol

Hi, our gp hadn't heard of it either, more and more these days I speak to health professionals who haven't heard of it either. I am dealing with KC secondhand as my 20 yr old daughter has it (she has Down's syndrome). Frustrating for us having to explain everything to those who we kind of expect would at least have heard of KC. Good luck with the dry eye. I give Bassets Everyday vits, the ones with lycopene 100rda. I read it on here yonks ago that it is beneficial to eye health. Worth a shot. Every little helps. Regards. A.

Hi Jacob

Celluvisc comes in a couple of flavors 0.5 and 1%. The 1% is more gloopy so it may be worth asking for that. I was told to use it every couple of hours. I and a lot of people make the mistake of using drops only when the eye is dry. Unfortunatly that's not how Celluvisc works it takes a while to take effect so ask for a few boxes and take it every couple of hours regardless

Ian

Hi there Jacob

My experience alas tends to reinforce what you've mentioned -- in General Practice, knowledge of Keratoconus is pretty skimpy. I often feel like I know more than they do, which is never a good sign ! For proper information, I tend not to bother with Primary Care and just go straight to an optometrist who knows about the condition (i.e. can dispense contact lenses for Keratoconus) or an ophthalmologist. A lot of the time, I think that the generalists are just guessing. And I can do that on my own !

Best wishes

Chris

Thanks for that!

Can opthalmologists/optometrists issue repeat prescriptions?

Hi Jacob

Yes, an ophthalmologist can issue a prescription which can be a repeat if needed but usually you don't want to see them that often, in the nicest possible way What's best in the situation where you get something prescribed by an ophthalmologist that you then need to take on a regular basis is to discuss the medication with the G.P. and then ask the G.P. to write the repeat prescription. This means that the G.P. is responsible for the issue of the medication -- but for the sorts of things we're talking about here, they're happy to do that. It's also beneficial to you as the patient because the G.P. is a lot easier to access in order to monitor anything that arises while you're taking whatever you're taking. If they think there's something amiss, they can then refer you back to the ophthalmologist if needed.

That's what's worked best for me in the past anyhow...

Cheers

Chris