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Sjogren's Syndrome Support

Schleral Lenses

Has anyone had any luck with Scleral Lenses? I have been wearing Ziena Moisture Chamber glasses daily for almost 3 months now. They seem to be the best on the market in terms of style, but I feel like Velma from Scooby Doo. The lenses are pricey and my insurance plan doesn't cover them. Please share your experience if you use these lenses.

I remember looking in to these a few years ago. It certainly looks like an interesting solution. But it is an expensive one,isn’t it? It sounds like you have not been successful with other strategies? You’ve tried most of the standards - tear duct plugs, restasis, warm compresses, lubricating drops and gels, etc? What treatments have you tried so far and with what success?

I've been on Restasis for about 2 months and don't notice any more wetness in my eyes. I still have to use artificial tears hourly along with moisture chamber glasses which I hate, but I can't stare at a computer all day and be in an heated office without them. Yes, I use warm compresses and gel at night. I haven't tried tear duct plugs yet. Maybe that's the first step. I'm switching my insurance plan so I'm going to wait until next year and try a new opthalmologist. My optometrist will create scleral lenses for me, but it will be out-of-pocket, I think about $1000 (?). I'm willing to pay, IF they work. But, what waste if they don't.

You can do a search on the plugs on the site. A lot of people have had some success with them. Personally, I got almost no relief when I got just the lower ones done, but much better results when all of my tear ducts were plugged.

Hopefully you are using preservative free drops.

I’ll also tell you what my eye doctor says about restasis. The idea is that what while the results may not be obvious, if you stop using them your eyes will become much dryer.

Thanks for the info. about Restasis. I was wondering if they might be doing something, just not enough. I'll look into the plugs and will probably get those done early next year when I'm on my new insurance plan. Thanks again for sharing your experience/knowledge!

I will be fitted for these in June 2016. My eye doctor has arranged for me to get everything covered price wise through a training school (UAB in Birmingham).

I will keep everyone posted.

I'm anxious to hear how they work for you. I'm still using moisture chamber glasses, have been on 2 rounds of Blephamide Drops and a round of Azithromycin and my eyes are as bad as ever. I'm desperate for some relief and my doctor doesn't think plugs are the right choice for me. I hope you have success with the lenses!

I have been MIA. The lenses got pushed to November.

I have not been doing well…eye infection in my left eye and lost my job due to numerous absences.

Hi - I worry about my job too. So far, I’ve been managing, but I’m miserable all of the time and have nothing left for my family when I get home. Is it true that you can get LTD with a Sjogren’s diagnosis? I am still not officially diagnosed, but I am pretty positive it’s what I have.

Since my original post, I have tested scleral lenses. I was able to try them on for an hour and walk around outside. My eyes burned as bad as ever. So, I’m still wearing moisture chamber glasses every day (over a year now). I am seeing a new doctor who is thinking that sclerals combined with a drug like Neurontin might help.

Keep us updated on your experience if you end up trying sclerals. And I hope things improve for you soon.

I am not sure about long term disability. I am trying to get it but the process just started. I received my denial letter from social security disability last week and have begun the appeals process. I was told this can take up to 16 months. The chances of getting it are better if you have other issues along with Sjogren’s. I am hopeful.

Good luck dear. I will keep everyone posted.

I saw a doctor at the UCSF Sjogren’s clinic and she told me that I could
apply for disability if I got the official diagnosis. I told her that I
thought everyone got denied. She said, you will, but keep trying and you
will eventually get it. Not sure how true that is, but it’s worth talking
to a lawyer. I did meet with a lawyer who recommended that I apply for
disability first, then work with a lawyer after getting denied. It’s
unfair. So hard to work with eyes that feel like they are on fire.

I hope that all goes well with all of you!!! I have never heard of moisture chamber glasses, or scleral lenses. I have used Restasis for years, with no improvement, albumin which is a compound drop, that provides relief, and a few blinks of clear vision, and most recently xiidra. I am finding the xiidra is not as burning or blurring as the restasis. However, I did not, and have not seen an improvement in my vision with any of these. I am honestly afraid that I am going to lose my driver’s license.

I went today for a fitting of Schleral lenses. The resident put one in my right eye and it hurt. I think I am the extreme cases where I am like the princess and the pea. Well it felt like a grip on my eye (pinching). Then the doctor came in and expressed that since of my touch sensitivity that I am not a candidate for them. So this is off the table. Now…I am in limbo because no one else has anything else that I can try that is affordable. The lenses were not going to be cheap but because I went through a University’s Optometry Program, it would have been covered.

That’s really frustrating. I’m not sure what strategies you’re using on a daily basis. Do you have your tear ducts plugged? Using restasis or Xiidra? Warm compresses? If you’re using lubricating drops and it’s not enough, talk to your eye doctor about other drops, including drops made from your own plasma.

Warm compresses yes and tear ducts plugged. I use lubricating drops every hour that I am awake. As far as Restasis/Xiidra or drops made from plasma…these are things that my insurance doesn’t cover much on and they want me to pay 100% of the money up front and then get reimbursed the difference 3 weeks later. I have other bills to pay. So Sign!!! I am in limbo.