Programmer Happy with Scleral Lenses

[Styx]

Hello,

This is my first and possibly final post but during the months of Sept. 2010 - March 2011, I was constantly hovering around this forum and others looking for help. Given that my career was in jeopardy due to my eye problems (along with pretty much everything else), I decided to move as quickly as possible to resolve this problem.

I have a number of health problems which I usually attribute to an underlying immune-mediated disorder. I won't go into the details, but eventually this began to effect my eyes. At first, the prospect of dry eyes didn't concern me, but as a software engineer, it quickly became clear that this was going to become a debilitating problem. No matter what intervention I tried, I could only write code for a max of 4 hours, and I was in constant pain the entire time.

The therapies I tried before scleral lenses included many different types of drops, compresses, punctal plugs (all 4 puncta), lacriserts, goggles, etc. I'm sure I'm leaving some other ones out. The only therapy that really helped was punctal plugs, which provided enormous relief for several months, but eventually my eye disease progressed. Fortunately, I am a pessimist and assumed that would happen So I read everything I could about advanced therapies while I could still look at a computer screen.

Once I reached the point where no intervention helped, I immediately took 2 weeks off from work and flew to Houston to receive a pair of Boston Scleral Lenses. I was skeptical at first, but this was the only shot I had to save my career.

By the way, I hate doctors and am highly critical of them But in general I would say the Baylor eye docs are some of the best I've met so far in my health odyssey. One thing is for sure, I'm indebted to Dr. Rosenthal for these devices!

So I noticed a lot of people asking about "how effective are the sceral lenses work with computer". I couldn't find any answers before therapy, so I'm providing one now

Awesome. Really, really awesome. And this is coming from someone who stares at a computer for at least 8+ hours a day with minimal blinking.

I have no trouble programming now. I'm not entirely asymptomatic, particularly after long stinds, so on those occasions, I have to put in an eye drop, but I usually forget to take them to work and that's not a problem (bear in mind I was using them every 15 minutes at least previously).

These devices saved my livelihood, and on top of that I can watch movies, tv, etc. without having to use drops or close my eyes (and be in agony regardless).

I'd write more, but I need to head out. Good luck to everyone here, and thank you for pointing me in the right direction!

Styx

P.S. I was originally concerned about the scleral lenses because I read a number of negative reviews on the internet; however, I quickly noticed that these are the same people posting over and over across multiple forums (I think one was named DryEyeQueen). I just wanted to let everyone know that I suspect most people who are treated with sclerals leave this forum and never come back, so don't be discouraged by the lack of positive posts. If you look at the medical literature, the therapeutic benefits for people with GVHD, Sjogren's etc. is astounding, and that information is not anecdotal.

[pecan121]

How wonderful that you have found a way to deal with your dry eye and have a career! I just want to ask a couple of questions. Were you light sensitive to florescent light? Do you have trouble now keeping the lenses clean? I have Synergeyes and still have trouble with protein deposits and mucus. I'm sticking with my lenses for now, but in the future I might need something else.

[NeedMyEyes]

Actually, I'm interested in sclerals (BFS, Synergeyes, or others) for computer work in my career as well.

I have been told they cause / exacerbate Lid Wiper Epitheliopathy. I have also heard they can be very uncomfortable and make your eyes go beat red?

Also, are you tired at the end of the day of work? Do you have enough energy to go to the bar after work? Can you wear your contacts after work?

Thanks,

NME

[Rebecca Petris]

Awesome. Really, really awesome. And this is coming from someone who stares at a computer for at least 8+ hours a day with minimal blinking.

I have no trouble programming now. I'm not entirely asymptomatic, particularly after long stinds, so on those occasions, I have to put in an eye drop, but I usually forget to take them to work and that's not a problem (bear in mind I was using them every 15 minutes at least previously).

These devices saved my livelihood, and on top of that I can watch movies, tv, etc. without having to use drops or close my eyes (and be in agony regardless).

Fabulous. Great to hear it.

I just hit my 5th anniversary. I talk to new scleral (PROSE, mostly) wearers frequently but don't often see them on the board. Great to hear from you.

[tearless2]

Styx, That's great news about the sclerals in Texas. I don't need them now but I might in the future. I have heard it is harder to get good comfy sclerals in the dry eye population as opposed to others that need them (i.e. keratoconus) so I'm happy to read that you found success.

Did you try restasis? I am wondering since I too might have autoimmune related dry eye and I was kind of hoping restasis would stave off the dry eye progression somewhat.

[grandsporta]

Do you feel it has helped with your dry eye? I am thinking about making an appointment soon and seeing what can be done for me but want to see if it even helps.

[Styx]

Well, I'm back and still wearing sclerals

The sclerals have been fantastic over the past 9 months, but unfortunately, I have noticed some changes. It's still unclear to me whether this is due to a change in the lenses (which I doubt) or my eye disease continuing to progress.

NeedMyEyes, you may have been Nostradamus on the whole LWE thing. Very recently, I've started experiencing pain in my left upper lid while working at computers extensively. I believe that this is due to my left eye continuing to "dry out" and friction with the contact, but I'm not sure. I've also had some problems with the lenses becoming dirty. These are primarily problems with my left eye only, which is the drier of the two, and why I believe this is due to my eye disease continuing to worsen and not the contact.

To be clear though, these problems are trivial compared to those I had when not wearing the lenses, though the LWE thing does concern me a bit because drops aren't as helpful as I suspected at resolving the dull pain. I'm looking into it (if that's what I'm feeling).

When I first had the lenses put in, I was able to remove my lower plugs (the uppers are cauterized). Recently, I had the left lower put back in.

I still don't know what I would do without sclerals. In response to others posts:
1) I typically find that after work I can go do pretty much anything social and be fine as long as I use a few drops here and there. I date a lot after work now that I'm not in huge glasses anymore (and, moreover, can actually make eye contact).
2) I do have problems with the lenses getting dirty, but it's not a huge problem. A drop of Refresh knocks it out for awhile.
3) I did try Restasis. I'm pretty unimpressed with that drug and it boggles the mind why it was approved by the FDA and is being prescribed. It doesn't appear to be very dangerous (which is why I imagine it was approved), but the clinical trials demonstrate that it's not very effective either.

Styx

[Styx]

Just to clarify one thing: the discomfort from wearing the lenses and not wearing the lenses while working at a computer is night and day. The lens discomfort is nothing compared to the constant burning sensation I used to feel. Up until recently, I didn't notice the scleral lens was in my eye at all and experienced no discomfort. I'm still a bit confused as to why I've had some new discomfort in my left eye, but I'm going to have it looked at in Houston.

[Rebecca Petris]

Styx, I'm very happy to see the lenses are still working well for you.

I've started experiencing pain in my left upper lid while working at computers extensively. I believe that this is due to my left eye continuing to "dry out" and friction with the contact, but I'm not sure. I've also had some problems with the lenses becoming dirty. These are primarily problems with my left eye only, which is the drier of the two, and why I believe this is due to my eye disease continuing to worsen and not the contact.

Interesting.

I too have a left-eye-only problem involving lid discomfort and increased deposits on the lens. For those of us who can't go very long without the lenses, we have no adequate way to determine what's the lens vs what's disease progression. (For me though my right eye is the driest not the left.) It's been too long - 5.5 years in fact - for me to remember but I kind of think I first started having problems with that left lid less than a year from when I started wearing them.

For me, the closest I can get to understanding it is a sort of GPC type thing. (That's not supposed to be unilateral, but whatever. I had some 'issues' with the left eye way back in the dark ages with my soft lenses too which I am sure were related.) Doctors, apropos of another thread here... different considerably about what it is and what to do about it. The doctor whose opinion I most value on corneal disease concurred that it's a type of GPC though. These days, I don't bother asking a doctor about it because while in the past I used to attack it with a variety of Rx drops when it got bad enough that I couldn't wear the lens, I am finally in a place where I seem to have a strong enough sense of the pattern that I can prevent it before it gets bad enough to need medical intervention. I don't like drugs, and I do like prevention, so I'm pleased to be 'there' even if it involves sometimes going for a day or two without the lenses, which is tough both from a pain and vision standpoint (can't drive, work etc). But it's what it takes and that's OK.

Good luck getting to the bottom of yours. From my own experience and observation of others, I would encourage you to avoid overwear.

I have this vague recollection from a movie seen ages ago (was it deep blue sea?) with these scary incredibly intelligent sharks, and this gal towards the end who's about to make herself bait for one of them, says something like, "No matter how smart you are, you're still just an animal!". So with PROSE/sclerals in general. It's a miracle device for many people, but at the end of the day, no matter how great, it's also still just a big hard foreign object in your eye! It doesn't do to overdo it.

[Styx]

It was just nice not having to think about my eyes for 9 months. I got spoiled

Have you had your pair replaced? I agree that the hardest part is distinguishing between whether my eyes are just getting worse or something has changed with the contacts, and it would seem replacing the lenses might narrow the problem space. I am going to have this checked out in Houston next month, and I'll report back with what they find.

Are there published guidelines on wearing time or do you just develop an individualized gut feel?

I'm also interested in the RX drops you used and any other information, and I'll report back with my progress. I guess GPC wouldn't surprise me. And Rebecca, thanks again for the site; I don't think I've said that to you directly. It's been a phenomenal resource.

I love the Deep Blue Sea analogy

[Styx]

Update: I think at this point, it's doubtful my scleral experience will be very useful to anyone given how confounded and bizarre it has been. Oh well. I'm still here looking for advice and to share.

I wore my scleral lenses for ~6 months very happily from sunrise to sunset and even removed my lower punctal plugs in both eyes. During those 6 months, I was essentially completely asymptomatic with the lenses. Then the pain started in my left upper lid. I continued to wear the lenses for probably 4 more months and used drops frequently to combat the pain. I then discontinued wearing the lenses, and interestingly, realized I didn't really need them. I was in less pain now without the lenses, though I have had to make sure I have my lower punctal plug in my left eye (so both plugged on the left, only upper on the right).

I realize that sounds a bit outlandish, and the first conclusion to jump to is that my eyes were never that bad, but it's not the simple.

Over the last year, I've been on and off an impressive assortment of potent immunosuppressants. These include moderate doses of azathioprine and rituximab. Before I had sclerals, I underwent a round of high-dose corticosteroids w/ pulses of methotrexate. So my experience is confounded to say the least, and there is little doubt in my mind that my dry eye symptoms are immune-mediated.

We still don't have a name for the immune-mediated condition I have, but it seems likely that I've developed secondary sjogren's syndrome as a result. The latter has largely been unresponsive to immunosuppressive therapy, but I'm compelled to think that it may have had a positive effect on my dry eyes. They were really bad back in March of '11, and now they're not as bad (with plugs).

But Rebecca, what's really surprising is that my "dry eye" symptoms have improved (much less burning, very little difficulty keeping my eyes open despite ample time in front of a computer), yet the "painful lid" symptoms have continued to worsen despite not wearing the scleral lenses for months. Of course, wearing the lenses exacerbates the pain considerably. I do still wear the lenses socially on occasion, and the upper-left lid pain is very significant. So I'm compelled to think that the lid symptoms are a part of my primary disease and not due to the contacts, though the latter is still possible I suppose.

Weird. Oh well. At least my biggest problem is that I wish I were in less pain when I wore the lenses socially Knock on wood.

Rebecca, I apologize for my arrogant comments earlier and in other threads; late-December, early-January was a tough time for me. I'm doing much better now though, and I aim to stay that way

P.S. I am in no way advocating that people start doing rounds of potent immunosuppressive drugs to improve their dry eye. From what I've read in the literature, it seems super unlikely to improve the condition, though I am a bit flummoxed by my own experience :/ If I had to guess which drug improved my symptoms the most, I would guess azathioprine. There is precious little data on azathioprine and dry eye in the literature, but I just find it hard to believe that it improved my condition given the poor results that cyclophosphamide has had on dry eyes in anecdotal studies I've read...

[Styx]

Quick clarification: I certainly wore punctal plugs before I was wearing scleral lenses as well as now, so again I can't explain why my dry eye symptoms have improved aside from immunosuppressive therapy (or spontaneous).

[Styx]

Oh, another thing I know there is a lot of excitement in the literature about rituximab and Sjogren's. Indeed, I was excited to use it because of the effect it could have on Sjogren's and the primary condition we think I have.

Well, it certainly didn't help with my primary condition, and I think my eyes were doing better before I even started it after about 9 months of therapy with azathioprine. Azathioprine has been very effective at treating my primary condition, and the timing also coincides well with my ocular improvement, hence why I'm attributing the improvement to azathioprine, if anything.

[woods]

Dear Styx,

Do you mean that your DES being improved by the scleral lens please? ......Will the sand paper sensation being eased too after removal of the lens please?

[Rebecca Petris]

Hi Styx! Great to hear from you. What a story. Dontcha wish these things would be just a little less variable and challengin sometimes?

Just realized you'd posted a couple of questions back in December that I never answered. I have not had my lenses replaced, but I did send them in for new plasma some months ago when I was having a really bad flare-up. Had to be out of the lenses for a couple of weeks I think all told. It was rough. And, "Are there published guidelines on wear time"... can't imagine there are. It's so individualized. It's taken me a long time to find the right balance and even now I mess up, sometimes because I ignore the signs of worsening just because I'm so busy I don't want to take my lenses out, or whatever.

Very interesting about the apparent divorce of your corneal vs eyelid symptoms. So glad to hear the cornea part of the equation is doing better at least. Before I got to the part where you said the lid symptoms worsened even without the sclerals I was thinking about this issue which I've run across with other people before... the delicate balance dry eye scleral lens patients have to achieve, as they try to avoid worsening the lids while improving the cornea. - Also I was thinking of how with some people, it seems like a long stretch in sclerals may actually improve dryness symptoms, almost like wearing crutches for awhile while you're healing. Not feeding the inflammatory cycle if you will? Something like that. Anyway might be irrelevant here but it came to mind.

Wish your lid pain could get further pinned down though. Any chance any substances might be contributing? Just throwing out an example again... Some years ago I tried Sterilid. (Great product, I know a lot of people using it successfully.) Apparently by coincidence I starting having significant left lid pain. Sore, tender. Never seriously thought it could be the Sterilid but I discontinued just in case. Then started up again. Repeat process. Again. Yup, it was the Sterilid. It did not make sense (why would it affect just my left lid anyway?) yet - after I saw cause & effect consistently enough times I couldn't escape the fact. Sometimes problems can come from unexpected sources.

[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