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Autoimmune sufferer with Dry eye and contact intolerance looking for help

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  • Autoimmune sufferer with Dry eye and contact intolerance looking for help

    My name is Lauren, and I have Crohn's disease. Around the same time I started having issues with the Crohn's, my eyes started getting fuzzy. I didn't make the connection between my disease and my eyes until recently when I started doing some research, but I believe the two are probably connected.
    When I was in high school I was able to start wearing contacts with very little problem. I wore the night and day contacts because they were more breathable, and the optometrist I was seeing at the time thought that would be best for my eyes. I usually did not sleep in them because they would get so sticky over night. I constantly used rewetting drops. After about a year wearing the Night and Day contacts, the doc I was seeing thought the Oasis contacts would be better for me. I was able to wear those for 2 years. Then out of nowhere they started burning when I would put them in. I rarely slept in them (when it did happen it was by accident), and I only wore them for 2 weeks, because I am immunosuppressed, I didn't want to take the chance of getting infected. I didn't know why my eyes burned so bad.
    At that point I just started wearing my glasses, I thought maybe my eyes just needed a rest. After about a year I decided to try contacts again. I explained what happened to the optometrist and she suggested that I should use better eye drops, she suggested Refresh eye drops before and after I put in my contacts or took them out. She also suggested using the special contact rewetting drops. We started off with the oasis contacts again because I had done so well in them for so long, but less than 2 weeks later, they were burning again every time I put them in. They would also water like crazy. i went back to the optometrist and we tried a different brand, I don't remember the name, but she picked them because they were made of a different material, and she thought maybe I was allergic to silicone (I think) that the oasis is made out of. This was all several years ago, so I may have some details wrong, but the general gist is that we tried several different brands and types of contacts. We tried different eye drops, including allergy eye drops 30 minutes before putting my contacts in, and after taking them out. I also tried different types of cleanser, including Clear Care to completely clean and disinfect them every day. No matter what we tried, about 2 weeks into new contacts, they would start to burn... but I could switch to a new brand and have no problems, for another 2 weeks. We did not try Restasis, I'm not sure if it was around back then
    I tried dailies, with some success, but I only got a week of trials, and I was afraid to spend the money on them, to have an issue a few weeks later. And they are super expensive.
    So here I am, about 2 years after giving up, thinking about seeing an ophthalmologist instead, for a few reasons, and trying for contacts again. I was hoping that maybe I could find some good suggestions of things to try.
    I also have problems with dry eye with out contacts. Occasionally my eyes will sting out of nowhere, similarly to what happens with the contacts. They get itchy, and sometimes I wake up and my eyes feel so dry it hurts to open them. My eyes feel sticky sometimes as well.
    I also had an issue when I was on high doses of prednisone and my eyes changed from 2.5 to 3.5 in a week, and they never changed back.
    I am currently on Seasonale (birth control) Zyrtec (antihistamine) Cimzia (immunosuppressant) Zoloft, Tramadol, Flagyl, advair and flonaise. I have allergies to everything that pollinates, as well as most animals. I also live in a very dry climate here in Colorado.

  • #2
    I think you should get your eyes checked for dryness with an optometrist or possibly an opthamologist that specializes in dry eye. Perhaps this individual could do some tests like look at your eyes under a silt lamp or even the yucky schirmer's test to evaluate the dryness and whether it's due to MGD or aqueous deficiency. You may be a good candidate for restasis, plugs, or something else. You might want to try a heated rice baggy on your eyelids to see if it helps. But, in some cases this irritates people more. I think it's important to get medical help sooner rather than later.

    Now, It will probably be hard to find an experienced dry eye doctor in a smaller town like Greeley. Try to do research before you go to an expensive and time consuming appointment. Call around. It might be worth a trip to Boulder or even Denver to find a specialist. Do you see a rheumatologist for Crohn's disease, perhaps they know of a good dry eye specialist. I have found optometrists are sometimes better than opthamologists in dealing with dry eye and they can prescribe eye meds, plus they are experts in fitting contacts.

    Thanks for the detailed post. Keep us up to date with what happens.

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    • #3
      Hi Lauren,

      My name is Chris and I have Sjogren's which is an autoimmune disease like crohn's. I think you should look into LDN therapy especially for crohn's. I know many people have used it successfully and I have used it myself for over 3 1/2 years. LDN practically saved me from a life of misery and pain. You can google it and you should find recent research/clinical trials published by dr. Jill smith and you shall find very encouraged news. I believe LDN will also help your dry eye if you also suspect autoimmune. Good luck.

      I was obsessed with my dry eye before but forgive me for not being around because since I got my health back I stay away from this forum because everyone of you reminded me of what I used to be. But please read up on LDN therapy, it is the real deal.

      Best to you,

      C.

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      • #4
        Re

        thanks for the replies! I will look into that LDN procedure, and ask about it when I go in.

        http://drkisling.com/
        that is who I am looking at seeing. He's not terribly far from me, and none of the Docs I found here in Greeley have said "we specialize in dry eye!" Reading through some of these posts, my eyes are defiantly not in terrible shape... the burning is occasional, and the itchiness is usually ok with allergy drops. I asked my GI, and he didn't know of anyone specific, plus, i travel 2 hours to see him, so going to fort collins will be much more convenient. I'm not surprised that there is a link between autoimmune and dry eye, There is a link between Autoimmune and pretty much everything else.

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