Is it this expensive for everyone?

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Gary Paterson
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Keratoconus: Yes, I have KC
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Is it this expensive for everyone?

Postby Gary Paterson » Sun 11 Feb 2018 9:07 pm

Hi,

I was diagnosed with KC a few years ago at 35 which I've been told is odd. When I was diagnosed it was recommended that I get my eyes scanned 6 months later to check how quickly it is progressing. As the result of this was inconclusive I had to go back again six months later, then again and again, at a cost of £250 per visit.

In addition is the cost of lenses, at £650 per pair, getting new lenses every year.

Finally the cost of other stuff, the Regard solution to put them in is twice the price of saline, but of course i need saline as well, and then there is the eye drops at £12 for a small bottle and finally the vitamins that the optician suggests i take for dry eye.

Is this the same for everyone else? I need to get my eyes scanned again but I now wear RGP lenses and the advice is to not wear them for 2-3 weeks before getting scanned!!! I don't know in what world they think I could survive and work without my lenses!!! So I am worried that I go there, get scanned, pay another £250 and then be told that the results are inconclusive as I have not had my lenses out for 3 weeks...

I have just discovered this site and am so grateful that it exists.

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space_cadet
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Re: Is it this expensive for everyone?

Postby space_cadet » Mon 12 Feb 2018 11:07 am

When my eyes could tolerate lenses the most I paid was from memory around 50quid but solutions on top. That was a good few years ago now so am sure someone will be able to let you know more upto date costs.
May09 Diagnosed with KC, March 2010 after a failed transplant it has left me legally blind. May 2017 a long cane user who is blind in a once sighted world

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Anne Klepacz
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Re: Is it this expensive for everyone?

Postby Anne Klepacz » Mon 12 Feb 2018 11:34 am

Hi Gary and welcome,
Most of us have our KC monitored in an NHS hospital clinic, where check ups are free and we pay the NHS price for contact lenses which is currently £57 per lens. So to avoid the costs you're paying, you'd need to ask your GP to refer you to a hospital eye clinic (if possible, one of the big city hospitals with their own contact lens department).
I don't know whether the 2 weeks without lenses is standard for a scan to check whether you need CXL - hopefully others will be able to tell you more.
And if you'd like our information booklet on KC and to join our mailing list of members who get newsletters and other updates from us, just e-mail your postal address to anne@keratoconus-group.org.uk

Grant
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Keratoconus: Yes, I have KC
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Re: Is it this expensive for everyone?

Postby Grant » Wed 14 Feb 2018 4:10 pm

Hi Gary,

I was first diagnosed at a similar age to you. My optician referred me to the local hospital and the most I've paid the NHS is £114 for a pair of lenses. My hospital also only charge this a maximum of once per year - this was helpful in the early days when my prescription was changing quite a bit. Not sure if this is a national approach or just a local one.

Gary Paterson
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Posts: 3
Joined: Sun 11 Feb 2018 8:48 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: Is it this expensive for everyone?

Postby Gary Paterson » Wed 14 Feb 2018 6:50 pm

Thanks all for responding. I'm going to call my local hospital tomorrow. I'll let you know how it goes.

Sunny131
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Re: Is it this expensive for everyone?

Postby Sunny131 » Fri 16 Feb 2018 4:09 pm

It is expensive for sure mate. Here in India, there is no Govt prices. Mini scleral lenses are an expensive solution to a problem which doesn’t really have too many answers at the moment

Kris
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Keratoconus: Yes, I have KC
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Re: Is it this expensive for everyone?

Postby Kris » Sat 17 Feb 2018 2:09 pm

Hi Gary,

Echoing above posts, most monitoring is done by NHS clinics, which is free and then the standard cost per lens of £57. I currently wear scleral lenses, which can be thousands so this is a big big help! However, I did have to sort a set of glasses myself, those were not covered.

The solutions etc are not cheap, but normally you'll be able to find them for reasonable prices if you shop around a little bit. For example, my saline solution can be priced anywhere between £2.50 to £3.85 (normal retail price). So it's worth having a look around, online pharmacies, big shopping sites or similar. And I always buy in bulk when I can find the good price!

Before sclerals I wore RGP lenses too and the advice of 2 weeks without lenses was the same for me (still is in fact). They suggest that any rigid lenses affect the 'real' shape of the eye and to get a proper reading it takes 2 weeks for the eye to normalise. They will then do a topographic scan of the eye and see if there any changes and whether CXL is needed. It's a pain to not wear lenses for 2 weeks but at the time I was working from home and it was a bit easier. Now that I have had CXL and no longer work at home, I have told them it is impossible for me to NOT wear them as it would literally involve me taking time of work to do so as I wouldn't be able to drive! However, they asked if it was possible and when I said no, they suggested they will monitor it by vision alone for now. But this is after CXL when changes shouldn't happen anymore, so it might be worth doing once or twice for you, just to make sure you get an accurate topography done. Personally I don't believe it will make a huge difference, because surely if you wore the same lenses for each reading, the base line and any changes should still show up, but then I'm not an expert!

Good luck and hang in there!


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