Living with Sjogren’s – Scleral Contact Lenses

Scleral Contacts for Dry Eye

One of the pictures a local news station took for a piece they did on my story of dealing with Sjogren’s Syndrome, and dry eye. The reason I’m writing this blog post…to let others who are suffering from extreme dry eye that THERE IS HOPE.

Off topic, and a probably the longest blog post I’ve ever done, but in a way it is directly related to the goals of my blog.  It’s science related!  It’s also directly related to my birding! But more than that, I want to tell my story, in the hopes that it can help other people who have gone through what I’ve gone through over the last few years.

There’s definitely a reason I stepped back from photography, working on my website, and blogging for almost a year.  In short…turning older sucks (I recently turned 50).  It sucks more when you get hit with a health issue.  I was diagnosed with Sjogren’s Syndrome about 3 years ago now.  It’s not fun!  It’s an autoimmune disease that has variable symptoms, but it generally includes fatigue, joint pain, and most annoyingly for many, autoimmune attacks on the moisture glands in your eyes and mouth.  The latter were my first symptoms.  It may sound minor, but it can have a huge impact on your quality of life.  I’d learned to adapt to the dry mouth that developed soon after diagnosis, because for me, chewing gum provides great relief.  I even go to bed every night with gum in my mouth! If my mouth drys out at night, it will often wake me up, but a few semi-conscious chews on the gum and I get relief.

The eyes have been a much more difficult issue to deal with.  For 2 years, the dry eyes (my first Sjogren’s symptom) were annoying, but something I was living with.  That changed in late summer 2015, where it began to affect my vision.  I’d wake up with normal vision, but after a variable amount of time, every day, my vision would get very blurry due to extremely dry eyes.  I honestly don’t know where I’d be right now without the solution that I found.  I had no desire, or ability, to do bird photography or some of my other hobbies, and it was starting to affect my work in that there were days where I just couldn’t see well enough to work.

Starting last fall, I started working with a (wonderful!!) eye doctor in Sioux Falls, Dr. Hill, who wanted to try fitting a new kind of “scleral” contact lens. I have had glasses since I was 7, with extreme astigmatism, and although I’d tried contacts once before, many years ago, I never found contacts that would stay in the right position and allow me to see well.  Dr. Hill was hopeful that scleral contact lenses could both allow me to see without glasses for the first time in over 40 years, but also would also give me relief for my dry eyes.

Scleral contacts are larger than “normal” contact lenses.  They extend out into the whites of your eyes, with a ring of contact around the edge, but with a slight “dome” over your entire pupil and iris.  Before you put them in, you hold them horizontally with a little suction cup, fill them up with a saline solution, and then put them in your eyes while you’re looking down into a mirror. The idea?  That they will cover most of your eye, correct your vision like a normal contact, but also maintain a thin, domed layer of liquid that stays against your eye all day and relieves your dry eye symptoms.  I was skeptical at first, to say the least!  I was miserable though, was having a very hard time at work, and was willing to try anything.  Given my last experience with contact lenses, I wasn’t expecting much!

The whole experience started out rough.  Not only do I have bad astigmatism, but one of my eyes in particular was shaped very oddly.  It was very difficult to get a scleral contact lens that “fit” the contours of my eyes.  As a result, the first scleral contacts I tried would sometimes rotate spontaneously in my eye. Also, because of the poor fit, what’s supposed to be a sealed “ring” around your eye was anything BUT sealed, leading to that domed liquid layer either draining out, or being contaminated with debris from the eye itself.  My vision was NOT very good at first, as they didn’t fit right, and would become cloudy with debris finding its way underneath. They also weren’t very comfortable, and after a few hours, I always wanted to take them out.  It was discouraging, and my initial skepticism seemed well founded.

I went in for fittings and adjustments at least once a week, starting in October 2015.  By the New Year, I was still quite reliant on glasses, and was only wearing my scleral contacts sporadically. Towards the end of December, Dr. Hill told me there just wasn’t much more he could do with the kinds of scleral contacts available at the time…but, he said a new product was coming out in January that he thought just might solve my extraordinarily difficult case.

Again, I was skeptical, but tried to remain optimistic that the forthcoming new scleral contact line would work.  January came…and went, without the company releasing the new contact product.  Finally, by mid-February, the company launched the new line, a bigger scleral contact that covered more of the eye, was capable of compensating for extreme astigmatism, and provided a firmer fit that basically eliminated the possibility of the rotation issues I was encountering. Dr. Hill set up a fitting for the new line, and a few days later, I was called in to try them out. I was excited that this FINALLY might be “it”, might be the pair that fit my eyes, allowed me to see, and helped the dry eye issue.

I came in for a fitting, tried the contact, and…was immediately disappointed.  Once again, as soon as I put the contact in, I couldn’t see at all.  Dr.  Hill was puzzled, but it became apparent that the contact was rotated in an unexpected way, and thus the astigmatism correction wasn’t properly placed over the eye.  I left dejected as he took more measurements and said they’d try again. The next week, I went back for another try.

The day I went in for that refitting is a day that changed my life.  I had been quite miserable for several months by then, and had been into Dr. Hill’s office every week for several months.  I knew the routine…go in for another fitting, put in the new contact, and then have the disappointment set in as I’d immediately know it wasn’t “right”.  I went into that appt. in early March with the same mindset.  I went into what had become “my” exam room (I’d been there so often!!), sat down, and tried the new pair.

I COULD SEE!!  Right away I knew something was different, in that not only could I see EXTREMELY well, but they were comfortable.  Even during the times when the previous versions were “behaving” and I could see fairly well (which wasn’t often), they just weren’t comfortable, and I’d often have to take them out.  I sat there and waited for Dr. Hill to come back in the room…excited…hopeful…but still pessimistic that with my next blink, they’d rotate out of position just like every other version I’d tried.  But to my surprise, they didn’t budge.  Not in the least.

Dr. Hill came in, and could tell how excited I was.  He’d been used to coming in to a face filled with disappointment, but when he came in this time, I had a big smile on my face.  He started examining my eyes, sat back…and a big smile crossed his face as well.  Dr. Hill had been working extremely hard with me for several months, and it was quite obvious that I was a big challenge for him, a challenge that he was in many ways relishing!!  On that day, I think he was just about as excited as I was!  To be able to help someone with eyes as challenging as mine was certainly a big accomplishment for him, and I will always be grateful for the vast amount of time he spent trying to help.

I was the first person in the entire country to try this new line of contact lenses.  The contact lens company themselves became VERY familiar with my case, using my countless visits to help guide the fitting of other patients.  I will always be grateful not only for Dr. Hill, but for this company and new line of contacts that became available just when my need was at its highest.

I actually went HOME that day with a pair of contact lenses that worked pretty damn well!  It wasn’t perfect, as in one eye, the fit was still a bit off.  There were still 4 or 5 more visits back to the eye doctor to tweak the fit, to ensure they were snug against the eye, but not too snug, and were able to “seal” the dome of moisture inside that protected my eyes.  By early April, I was done!  We had a “final” pair of scleral contact lenses that were comfortable, that I could literally wear all day, and that PROTECTED MY EYES!  It wasn’t an easy path!  In the 6 months since I started, I had gone into the eye doctor almost 30 times for measurements and refitting attempts.  Many of those visits were 1 to 1 1/2 hours each, as they’d try a new contact, wait to see how it settled down on the eye, and then take new measurements to try again.

My eyes themselves are still incredibly dry without the contacts.  I wear the contacts from dawn to dusk, taking them out only when I go to bed.  After I wake up in the morning, I have maybe 1 “good” hour where I can see with my glasses, but soon, the dryness takes over and my eyes start to get very blurry.  But the MOMENT I put in the contacts, my vision is extremely clear, so clear, in fact, that I must say I can now see better than I ever had seen during my 40+ years of wearing glasses.  Ever since trying the newest line of scleral contacts, my eye tests showed my corrected vision was BETTER than 20/20!! I often have to refresh the liquid underneath the contacts once a day, taking the contacts out, cleaning them a bit, and refilling them with fresh saline, but that’s an extremely minor inconvenience, as in return, that little moisture dome bathes my eyes in liquid all day and makes my eyes feel (dare I say?) almost NORMAL.

With the Sjogren’s, my eyes are going to be a challenge for the rest of my life, but the scleral contacts have (literally?) saved my life.  Without them I was losing my ability to work, to play, to ENJOY life.  With them, I’m able to cope with one of the horrible impacts of Sjogren’s.  Avera and a local news station, KSFY, actually did a “medical minute” piece on my story, talking about the challenges of dry eye and telling the story of not only myself, but of Dr. Hill’s attempts to solve my difficult case.  It was quite the journey, but WELL worth it, and I hope my story gives hope to anyone else out there who might be struggling with Sjogren’s, or with other dry eye issues.

14 comments on “Living with Sjogren’s – Scleral Contact Lenses

  1. Joanne Fong

    Hi,

    I was researching Scleral Lenses and came across your blog on the subject. I wanted to know about how much these lenses cost you. I have Sjogrens and use restasis but it has not helped as much as I would like. I don’t think my medical insurance, Kasier, will cover the cost and was told by one optometrist that it would cost about 2400-2600 to get fitted for these lenses. Does that sound about right to you? Besides yourself do you know many Sjogrens people who find these lenses to be helpful for dry eyes and blurriness? Thanks for your response.

    Thanks – Joanne

  2. tlsohl@alliancecom.net

    You’ll be glad to know it shouldn’t be ANYWHERE near that much, Joanne! I paid like $450 total, for what basically is a yearly “subscription”. For that amount, I got everything…the lenses, initial exam, and unlimited fittings until they fit right. I have very, very odd eyes, both with my severe astigmatism prescription, and my eye shape. It took many fittings to get them to fit right, but because that company sells it as a yearly subscription, I only had to pay the one flat amount.

    I honestly don’t personally know any other people with Sjogren’s. Just a couple of acquaintances (mother of a co-worker, etc.). I think it’s a godsend Joanne. Do it!

    For me, one year ago today, my eyes were so incredibly dry that I’d get maybe an hour in the morning before my vision started getting blurry. I was also quite miserable with the burning and uncomfortable feeling. One year later, my eyes haven’t changed, and I’m still pretty miserable when I don’t have the lenses in. But literally the MOMENT I put the lenses in in the morning, I have relief. All day long my eyes are comfortable, no burning, no gritty sand feeling, no nothing. I don’t really notice the lenses from a comfort standpoint. If you can get them fit right, they are incredibly comfortable. The only reminder that I have them in is that most days after about 10-12 hours, one eye in particular gets a little cloudy because of build up on the lens. Not a big deal though, I can just pop it out and clean it for a sec, then put it back in and I’m normally good to go. I keep them in pretty much all day long, just taking them out for bed.

    I wish I knew the name of the actual company that makes mine. Mine is a new product that just came out at the start of the year. It’s bigger than many scleral lenses, which means that when they’re in, it’s only the very corners of my eyes that aren’t covered. With that big lens, it’s also a great fit. My eye doctor explained that when you go with a bigger lens like this, you’re fitting to a “pringle” shape of your eye, so once you get the fit, they lock right there and don’t move all day. My vision actually checks out at 20/15 with the lenses in!

    My eye dr. is Dr. Hill at Avera in Sioux Falls, SD. If you want to pursue this (PLEASE do…theses lenses saved me!!), maybe if you contacted them, they could tell you what brand they gave me.

  3. Joanne Fong

    Hi Terry,

    I went in to see Optometrist and they told me it would be about $700 for fitting and purchase of the Scleral lenses. The technician put in some test ones, a mini scleral in right eye and a regular size one in the left eye. After having them on for about 40 minutes I could tell the mini one felt more comfortable but I did notice that the whites of my eyes were much redder after wearing either contact. Did you have any issues with redness in the beginning? I am not sure if it is an adjustment thing that will get better over time or if the contacts are on too tight or if it is something else. I will get my order in about 2 weeks to try out and the company is ICD. Also I am doing mono vision so the left contact is for distance and the right is for reading.

    Joanne

  4. DakotaBirder

    Yeah, I did have redness at the edge, where the contact hit the white. It never bothered me, and it just gradually went away. Make sure it’s fitting well, that’s the big thing. It’s tough to go in and have them get it right in one sitting.its the fit that makes all the difference. If thy don’t fit right you will get redness and discomfort.

    Joanne, let me know how the left eye / right eye thing works! I was just in for the first time in a year today and ordered my second pair. He gave me an option to try the thing where one eye is distance, one is close up, but for now I passed on it. Will be curious to see how you like it. I’m 50, and reading glasses are something I need. Would like to see if this works for you.

  5. DakotaBirder

    BTW, my price today went up considerably over what I got them for last year. Will be $800. But this time they’re running it through insurance, saying they’re finding more insurance companies will pay. Thought I’d mention it…

  6. Heather

    Hi! I am so excited to come across this article. In the past I had Sjogren’s symptoms (dry eyes and mouth) for four years, was diagnosed with Lyme disease, treated, and symptoms improved for 8 years. Recently, after the birth of my second child my symptoms returned with a vengeance and have now shown up in my blood work as autoimmune (whether Sjogren’s, Lupus, or RA remains to be officially diagnosed – gotta love when doctors don’t have answers and they say they are just going to keep a close eye on it. Meanwhile, while they are keeping a close eye on it, aka doing nothing, I am living with the symptoms on a daily basis with no relief from OTC eye drops or sucking on a lemon drop as I was so kindly instructed to do). I am extremely active outdoors and have worn contact lenses since grade school. I absolutely hate glasses especially for working out and playing with my two young kids. Your article inspires me that my life may be able to return to “normal” without having to rely on glasses because of the dry eye issues.

    Some questions: Do you have any issues with your eyelids becoming irritated from rubbing over the lenses (do you still need to use OTC drops)? Are these lenses visually noticeable when they are in your eyes (since they have a dome to them, as opposed to regular soft contact lenses that lay flat against they eye – other people can hardly tell you are wearing contacts)? Have you had any issues with eye infections from wearing these lenses? How long do the lenses last if your prescription does not change? How long to they take to make?

    Thank you so much for your time and help! I can’t wait to ask my eye doctor about this option!

  7. TSohl

    Heather, DEFINITELY follow up. It could indeed change your life. I shudder to think where I’d be right now without them. I don’t think I could work. For me, my eyes get so dry that it makes my vision very blurry. Without the scleral lenses, I can’t function very well.

    With them in…I don’t ever notice them. No, my eyelids don’t ever become irritated. I NEVER use drops…ever! How many severe Sjogren’s patients can say that? During the day my eyes feel wonderful the whole time the lenses are in. I never feel the need to add drops.

    They are not visibly noticable. They’re just like any other contact lens, in terms of external appearance.

    In the 2+ years I’ve had them, I had one issue once with a little “callous”, where a misfitting lens caused the equivalent of a little callous on my eye. It was red and bugged me, but I simply stopped wearing the lens a couple of days, got the lens adjusted so it wasn’t so tight in that location, and I haven’t looked back. No eye infections at all since getting them.

    There are multiple companies out there now that make these. For me, it took a long time to get them to fit right. The eye doctor and the company went back and forth…many times…before I got a good fit. But I’m an extreme outlier here. I have very severe astigmatism and a weird eye shape. My eye doctor said it’s not nearly as difficult for most people. Once you order them it takes like 3-4 days for them to arrive for testing.

    Note there are more companies now, at least one of which actually takes a mold of your eye and ensures a 100% perfect fit on the first try. Those are quite expensive though (think I was quoted like $2,500 an eye). The ones I have were 10% of that (about $500 total).

    They also last forever! I still am using the original ones I got over 2 years ago! My prescription hasn’t changed, and these last a long time. My eye doctor said they could last another couple of years before I might need to replace them, if my prescription doesn’t change.

    GO FOR IT!! You will be VERY glad you did, and with all the options, I’m sure they can make some that fit your needs. I’ve gone from miserable to (dare I say it?)…normal! At least until the end of the day when I take them out. Then I’m back to being temporarily miserable. 🙂

  8. DakotaBirder

    Update for the Sjogren’s people out there who’ve looked at this post. It’s now about 6 years with Sjogren’s and 4 years since my eyes were severely impacted. I just went to the eye doctor for my yearly check in. That by itself is huge news. YEARLY!! After the literally few dozen trips it took to get a fit for my admittedly extremely oddball prescription and eye shape, I’m now only needing to visit the eye doctor once a year.

    The better news…there have been NO issues in the last 2 years. I had one incident early with a “callous” on my eye, where I needed a break for a week from the lenses. Since then…no issues whatsoever. In my visit this past week, he said the lenses are still fitting very well, and that he wouldn’t change a thing. In fact, my prescription is stable, my EYES are stable, and I don’t even need a new contact pair. That means I’m now going 3+ years on the same pair of contacts, and they continue to be LIFE SAVERS. The doctor also noted the little pits/damage on my eye from the dryness, something that was a problem when I first went in, simply isn’t there any more. Amazing what happens when you bathe your dry eyes in liquid all day.

    Sjogren’s still sucks (the arthritis parts are starting to ramp up a bit). My eyes are still incredibly dry, and I’m not fond of the times when I can’t wear my scleral lenses. But given what I was like before them, they’ve been a godsend! If you’re on the fence about going for scleral lenses, don’t hesitate. You won’t regret your decision to pursue it.

    1. Maggie Blackbird

      Thank you very much for posting this. I, too, suffer from Sjogren’s Syndrome. I have tried everything there is, but nothing has worked. I am going to talk to my doctor about scleral lenses.

  9. Meagan

    Hi, thanks for much for your post and update. Can you please me what brand worked so well for you? I have sjogrens and astigmatism as well.

    1. DakotaBirder

      The company is Art Optical, and the one I have is called AmpleEye. They cover most of the eye, which is nice for keeping more of it moist. And they’re durable as heck. I’ve had the same pair now for 3+ years.

  10. Trish

    Thankyou so much for keeping us updated. Sjogrens sucks.And the fact so little is known about it makes it so much worse. Especially in my country (South Africa) where most of the stuff available in the US is not here. Been searching for a contact that people with sjogrens can wear. Hope it’s available here.

  11. Betty Rogers

    I am so happy to come across this conversation regarding Sceral lenses. I am 66years old and have been living with Sjogrens, Scleroderma, and Biliary cirrhosis since I was 35. The thought of these contacts is so exciting. I will be contacting my eye dr to see if he can get these for me. I hope he can and I hope I have the same success you had.

  12. DakotaBirder

    I hope you have as much success as I have! I have a good routine going. I wear the scleral contacts for about 10-12 hours a day. It’s great, and other than having to take them out and clean them sometimes during the day, they make your eyes feel pretty normal!! Your eyes do need to “breathe” and you need a break from them, so most evenings I’m at home with my glasses on, and motorcycle glasses over the top! Looks…stupid. But if I don’t do that to keep the moisture in, my eyes dry out and my vision leaves me after about half an hour.

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