Programmer Happy with Scleral Lenses

[kanon]

I'm very interested in this thread. Couldn't read through all of it b/c it hurts my eye (the left one is bad, the right one is fine). Good to hear not to get scared by the negative posts about Sclerals. I am in the Netherlands and am about to go to "the best" doctor here to get fitted. They say they are "similar" to the Boston sclerals. Right now, I have my left eye patched- it just hurts to keep it open and i can function so much better if it is just taped shut. My right eye is fine and it gets me by I am scared about the sclerals, but optimistic too.
Questions:
1. Does it take a long time to get used to putting them in?
2. Can you feel them when they are in?
3. Has anyone patched their bad eye- and is this bad for it (since I'm not blinking, rather keeping it closed, is this making my MGD worse? I just can't stand to keep it open!
btw, I have all 4 cauterized ducts plus drops, anti-inflammatory diet, Restasis, vitamins etc etc.
Ashley

[patrick]

Hi ashley,

That's a long time ago!
Sorry to see you haven't improved very much.
I thought you had left the boards maybe because your eyes were a lot better now.
Unfortunately you're still in (a lot) of pain.
I'm also looking into the options of getting sclerals. I can't even continue my job properly this way so i really have to find some relief or i end up being disabled for my work.
May i ask who you're visiting to have these slerals fitted?

I wish you all the luck with this proces.
Patrick..

[DCRdryeye]

Hi Patrick, I've been trying to get a good fit with sclerals for 3 yrs!! still trying. Anyway, be careful with azathioprine, if you read up on it you will find one side effect is CANCER. I had a friend who was on it for a kidney transplant, she's dead now due to cancer. One reason is because the drug blocks "folic acid". So if you want to keep taking it...supplement with Folic acid.

[kanon]

Hi Patrick,
Yes I have been off the board. Partly because too much computer use hurts my eyes, but maybe mostly because I thought that if I quit worrying about this problem and stop reading about it so much that my stress would lower and it would get better.
Mirjam is putting me in contact with a Dr. here in the Netherlands that has fitted Scleral lenses for 20 years. She says he is really good at what he does. I hope! I have only used regular contacts just a few times in my life so I'm pretty curious as to how to get the sclerals in!
I feel so much better with my bad left eye patched. But of course I look dumb and get tons of questions when I walk to Albert Heijn!

I'm sorry you are still not healed. And the fact that it interferes with your job so much is upsetting I am sure. Good luck to you and we'll keep in touch!

[patrick]

hi dcr,

thanks for your reply.
fitting these sclerals took 3 years? that's a long time. and they still don't fit perfectly. what is the main problem with the fitment?
do you maybe have very irregular cornea's or are there any other issues that make fitting them difficult?
in what respect do you mean being careful with azathioprine? is this the main ingredient of azasite?
i am not on azathriopine nor have i ever been on it in the past to. and you're right cancer is some serious side effect indeed.
only medication i ever took for my dry eye is doxycycline. for the rest its just warm compresses,lid hygiene and taking fish oil supplements.
thanks for the warning anyway!



hi ashley,

in fact you're right to try to not think too much about your eyecondition. worrying causes stress and in turn stress exacerbates dry eye. but what i experience is that the pain that goes on all day long just forces you to think about it. it seems there is no way to really escape from it. (besides sleeping of course).

have you ever found out what the cause of your dry eye is? it isn't refractive surgery is it?

mirjam suggested that the next thing i could try is a pair of temporary bandage lenses for a while and if this offers relief we could consider having permanent scleral lenses fitted. my guess is that i will be referred to the same doctor as she recommended to you.

maybe i am gonna suggest first to try plugging all four of my tearducts with these flow control smart plugs. thing is that mirjam is not too keen to try this with me because i seem to be not all that aqueous deficient. i say;just give it a try! i'd rather have some overflow of tears than having red eyes all day due to dryness.

i can see what you mean with all the eyeballing in the albert heijn! it is just one of these things that come along with our condition that are far from pleasant.
especially if you're kind of vain. which i unfortunately am a bit.

good luck to you to and we keep in touch..

patrick

[DCRdryeye]

Hi Patrick, yep tried about 15 sets of sclerals along with multiple modifications. The problems are multiple and trying to fix each one is very difficult, eg: redness on the nasal area of conjunctiva, can never get passed 6 hours of wear without discomfort and redness, lateral inner part near cornea of conjunctiva has an engorged vessel that plays up after 4 hours and got worse (so had to have that part of scleral machined around to avoid it touching the scleral), one scleral had a foreigen body sensation in it. Now we've gone much larger with the size of the vault...so there's more saline that is to be placed in them. But this has made my vision blurry and can't be ammended. And so the problems go on. At first I of can't feel the lenses are in my eyes, then problems begin.
I just want a pair of sclerals I can where for 12 hours because like you, my job requires endless computer use, up to 12 hours a day!! They certainly do allow for longer computer use and the light sensitivity is reduced a lot.

In one of your above statements you said, "Over the last year, I've been on and off an impressive assortment of potent immunosuppressants. These include moderate doses of azathioprine and rituximab". And above you state "nor have i ever been on it in the past to". So it's either you have or have not been on it. It's got nothing to do with Azasite (azithromycin ophthalmic solution) an antibiotic, not an immunosuppressant.

[patrick]

hi dcr,

sorry for the confusion,but maybe it is my fault a bit to just walk into a conversation that was already going on. the one who said he was on and off an impressive assortment of potent immunosuppressants is styx, the original thread starter.

i hope for you that the lens fitting proces will be a bit more succesfull from now on. can understand the frustration that these darn lenses won't fit properly.
and maybe,but i am not an expert at all so forgive me my ignorence is spending 12 hours per day at a computerscreen just way too long for people with dry eye in general. i think it would even cause people with healthy eyes problems. i know for a fact i could never ever do that without getting myself in serious trouble. eyewise that is of course.

patrick..

[DCRdryeye]

Oh yes, I do appologize Patrick, I got the names mixed up with styx, I was somhow confusing you with the guy who went to BFS and started the thread. I've never been to BFS and now that Dr. Rosenthal is no longer there not sure it's worth a 24 hour flight, etc. Each time my scleral lens gets a modification or a new one, it takes 3 weeks sine they have to send the off to anothe state of from Australia. Meanwhile, it is very frustrating, if not, ridiculous continuing to make such baby steps and then set backs with this darn lenses. I'll keep going for now, I'm very stubborn.
All the best