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Finally have a treatment plan, and learned a lot!

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  • Finally have a treatment plan, and learned a lot!

    I saw a DES specialist today, an Optometrist. His practice is pretty much limited to DES, Glaucoma and Diabetes. I had corresponded with him online a bit, and he remembered that! He was very personable and very knowledgeable.

    I'm going to share with you what he told me, but keep in mind that everyone is different with regard to the cause of their DES so everyone's treatment plan should be tailored for their needs. Keep in mind, since I was diagnosed with the symptom of DES, my only treatment has been plugs and OTC drops, fish oil, Restasis (I'm allergic to it) and some occasional Lotemax. The Lotemax is the only thing that has provided any sort of relief. According to the doctor I saw today:

    1. Plugs generally don't help people who have inflammatory dry eye (as I do). I had one plug removed today, and may have the remaining one removed in a month or two.

    2. He does not recommend warm/hot compresses for anyone, but especially for people who have ocular rosacea or other inflammatory causes of DES. His take on that matched mine exactly. Whenever you have an inflammatory problem anywhere else in your body, you are instructed to apply ice, not heat. Heat only worsens an inflammatory condition. The eyes are no different.

    3. I have severe MGD and ocular Rosacea, with severe inflammatory dry eye. I am both aqueous and lipid deficient. Probably the cause of my DES is either hormonal due to peri-menopause (in which case it should burn itself out in 10 years) or the first indication of an auto-immune disorder such as rheumatoid arthritis, Sjogrens or Lupus.

    He did say had I waited another 5 years, there would not be the hope to get my eyes under control that there is now.

    4. His only mention of lid hygiene was periodic expression of my meibomium glands, which he did today.

    5. Using Patanol every year from April through August is WAY too much. There has to be something other than allergies going on.

    For now, my treatment is 4 weeks of Lotemax (steroids) 4 times a day for two weeks, then twice a day for two weeks, then taper off that over an additional two weeks and probably go on low-dose doxy for at least 3 months. I will probably end up going back and forth on these to keep things under control once I get it under control in the first place. He might also prescribe Metrocream for my facial rosacea, with the thought that it might actually help with the ocular rosacea by reducing a source of inflammation.

    There is a very remote chance that I might be able to wear contacts again, but not at least for a year. My tear film won't support them, not even Synergeyes.

    He explained that Lotemax is one of the safest ocular steroids to use, with a very low incidence of cataracts and glaucoma developing as a result. He did not hesitate to prescribe it at all and won't hesitate to keep me on it if the doxy does not help.

    I'm posting this as a triumph because I finally got the diagnoses for the symptoms I have been having for years. This has been a wonderful day. I learned so much and hope that this post helps others.
    Every day with DES is like a box of chocolates...You never know what you're going to get.

  • #2
    Thanks for this, Kitty. It is so detailed. I'm really happy that you and your doctor worked up a feasible plan!

    --Liz

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    • #3
      Yay, you!

      I've been using doxy for quite awhile now and it has helped me. I do have to take it after meals, and still use Pepcid and Tums, etc., quite a bit with it, but I still feel it has been worthwhile.

      Have you ever tried FreshKote? That and SteriLid have also been helpful. Those are the best of their types so far, that I've located.

      So far, I haven't been able to tolerate much in the way of Omega-3's, though I will keep trying. (And if I could take my Armour thyroid meds, that might also help, I think! Make me hyper, sometimes.)

      Please keep us posted. Thanks for such an uplift!

      Comment


      • #4
        Originally posted by lilahp View Post
        Yay, you!

        I've been using doxy for quite awhile now and it has helped me. I do have to take it after meals, and still use Pepcid and Tums, etc., quite a bit with it, but I still feel it has been worthwhile.

        Have you ever tried FreshKote? That and SteriLid have also been helpful. Those are the best of their types so far, that I've located.

        So far, I haven't been able to tolerate much in the way of Omega-3's, though I will keep trying. (And if I could take my Armour thyroid meds, that might also help, I think! Make me hyper, sometimes.)

        Please keep us posted. Thanks for such an uplift!
        As far as the Omega-3's go, they have done nothing for me. I have taken them for 3 years and my doc said my eyes looked as if I had never taken them. Everyone is different. You might consider a very high quality fish oil, like Twin Labs (it is called max or something like that), keep it in the fridge and take it cold, with food. You might be able to tolerate it that way.
        Every day with DES is like a box of chocolates...You never know what you're going to get.

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        • #5
          Congrats on finally getting a treatment strategy.

          Comment on number 1: It took me more than a year to come to the same conclusion---that plugs were making my eyes worse. This was right about the time I first went to an ocular surface specialist (also an optometrist, not an ophthalmologist), who said the same as your doctor (about plugs).

          I have Sjogren's but not Rosacea, and still use the warm compress, along with daily MG expression. I'm open to the idea of cold, though---as I do get flare-ups in my right eye.

          I've tried Lotemax. At the time I used it, my eyes were in bad shape, and the drop was very irritating. Even now, though, I keep a tube of Blephamide ointment for bad times with my bad eye. I just put a tiny amount on my lower lid--not in the eye. Since it has steroid and antibiotic ingredients, it's pretty strong. Has lanolin, petrolatum, etc. and a bad preservative. But still, it helps me in a pinch. Lotemax is much safer.

          Good luck with the new regime. Adding HOPE to the treatment mix---that's powerful.

          Calli

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          • #6
            Thanks for this insightful post. I have self-diagnosed myself with ocular rosacea, and I have also found treatment with ice way superior to the warm compresses.

            I have a question, though, why did the doctor say that it would have been untreatable had you waited five more years?

            Also, do you use lubricating drops much?

            Thanks.

            Comment


            • #7
              Originally posted by calcan View Post
              Thanks for this insightful post. I have self-diagnosed myself with ocular rosacea, and I have also found treatment with ice way superior to the warm compresses.

              I have a question, though, why did the doctor say that it would have been untreatable had you waited five more years?

              Also, do you use lubricating drops much?

              Thanks.
              He did not say it would be untreatable, just not as great a chance of getting it under control. I believe he was talking about damage to my corneas and other structures due to the dryness and inflammation. I use lubricating drops too many times a day to count. I use saline when I first get up in the morning, then use the lubricating drops 3 or 4 times over a couple of hours before I leave for work, then I'm putting drops in all day long.
              Every day with DES is like a box of chocolates...You never know what you're going to get.

              Comment


              • #8
                how are you doing on new treatment?

                Hello Kitty,
                I read your recent post and wonder how you are doing. It all sounded very familiar. In search of help for my post lasik dry eyes I've visited my 5th doctor. He also thinks it's greatly about inflammation. Control the inflammation and your tear glands can function more normally. I just started a new treatment plan. Lotemax 4 times daily for 2 weeks, to be followed up with restasis. I've seen a great deal of my inflammation go away after just 4 days. And hope the restasis will increase tear production. Are you feeling better or noticed a difference yet?

                Comment


                • #9
                  Originally posted by alywankin View Post
                  Hello Kitty,
                  I read your recent post and wonder how you are doing. It all sounded very familiar. In search of help for my post lasik dry eyes I've visited my 5th doctor. He also thinks it's greatly about inflammation. Control the inflammation and your tear glands can function more normally. I just started a new treatment plan. Lotemax 4 times daily for 2 weeks, to be followed up with restasis. I've seen a great deal of my inflammation go away after just 4 days. And hope the restasis will increase tear production. Are you feeling better or noticed a difference yet?
                  I am now on day 5 of my 4 wees of Lotemax and sadly, I'm not feeling any better. Lotemax always used to give me relief within a couple of days and I never experienced any side effects from it. Now I have burning, itching and increased dryness from Lotemax, almost feeling worse. I'm not reacting to it as badly as I did to Restasis and my eyes look better for the most part so I am going to keep using it and hope that soon the burning will subside. I suspect I did not have such severe MGD 2 years ago when I used it the last time, so my problem now is more likely both aqueous and lipid deficiency.
                  Every day with DES is like a box of chocolates...You never know what you're going to get.

                  Comment


                  • #10
                    Hello Kitty,
                    I am new to this forum and wondering how things have worked out for you? I am actually hoping that I donít get a reply which means you are doing well and busy with life instead of being on this forum!

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