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  1. #1
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    Default Sjogrens questions.

    I have looked at the older sjogrens posts, but couldn't find what I was looking for.
    Since I was just diagnosed with secondary sjogrens, I have a few questions and maybe these questions and answers, can help other sufferers too.
    I just got out of the shower and looked in the mirror and discovered, that I have a burst bloodvessel in my left eye. Is that normal? It is not red, like when you have red eyes, I can see the blood vessel and it seems like it is bleeding.
    I have always had mouth sores with the lupus, but now I have a sore on the inside cheek, as long as half of my little finger. It really hurts. Is that normal?

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    sorry i can not help.....

    but i know who can.

    marla is a member of a sjogrens site.
    she regularly comments on how good it is.

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    Hi Debbie,
    I'm sorry that I've just now seen this - computer problems!
    Are you being treated for the dry eyes that SJS causes? I used to get burst blood vessels in my eyes often when I was teaching, and I really didn't know why. Since I've been using Restasis, I haven't had a red-eye problem or a burst blood vessel at all.
    Has your rheumy sent you to an ophthalmologist? He/she can do a Schirmer's test and determine how dry your eyes are, and then go from there.

    I know that I've mentioned this in other posts, but my eye doc told me to ignore the instructions on the Restasis about using each vial only once. He said that it was safe to pop the top back on and re-use it as long as I kept it clean and cool. Restasis is expensive, even with insurance, so this really helps.
    I also take Pilocarpine, which helps me to make saliva. It really is helpful too!

    Here's the link to the Sjogren's Foundation: http://www.sjogrens.org/ It's really helpful.
    There is a support group site, too. I just lurk there for information, since they aren't the "cyber family" that WHL is!
    Hugs,
    Marla
    Last edited by magistramarla; 03-24-2012 at 04:00 PM.

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    Quote Originally Posted by magistramarla View Post
    Hi Debbie,
    I'm sorry that I've just now seen this - computer problems!
    Are you being treated for the dry eyes that SJS causes? I used to get burst blood vessels in my eyes often when I was teaching, and I really didn't know why. Since I've been using Restasis, I haven't had a red-eye problem or a burst blood vessel at all.
    Has your rheumy sent you to an ophthalmologist? He/she can do a Schirmer's test and determine how dry your eyes are, and then go from there.

    I know that I've mentioned this in other posts, but my eye doc told me to ignore the instructions on the Restasis about using each vial only once. He said that it was safe to pop the top back on and re-use it as long as I kept it clean and cool. Restasis is expensive, even with insurance, so this really helps.
    I also take Pilocarpine, which helps me to make saliva. It really is helpful too!

    Here's the link to the Sjogren's Foundation: http://www.sjogrens.org/ It's really helpful.
    There is a support group site, too. I just lurk there for information, since they aren't the "cyber family" that WHL is!
    Hugs,
    Marla
    Thank you Marla,

    I knew you would answer me, when you can.
    Well, my rheumy said, it is def sjogrens, just from the blood test. He told me to try OTC drops and mouthwash first, if that doesn't help, he will give me a prescription. Do you know, if he can prescripe the eyedrops as well?
    I have to go to the eye doctor soon anyway, it has almost been a year.
    I have peeked into the sjorgrens support group a few times.
    My eye still looks pretty bad, it is probably from the dryness.
    I was shocked, when I read that sjorgrens can also attack your organs. What lupus isn't bad enough?

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    Hi Debbie,
    I'm finally back, with a brand new router. I hope that it makes my computer connection more reliable.
    My eye doc recommended Systane for my OTC eyedrops. I use them between the Restasis doses.

    Isn't it a shock to read what Sjogren's can do? I attended a Sjogren's conference, and it was eye-opening to see lots of others who walk and talk like me. The doctors who spoke that weekend talked about the systemic problems that it can cause - we listened to neurologists, cardiologists, pulmonologists and of course ENTs and ophthalmologists. That's why I got so angry at the neuro that I saw when he stated that Sjogren's is "only dry eyes and mouth and is easily treatable".
    It's amazing how much all of our AI diseases overlap and mimic each other. That's why I keep saying that they are all on an AI spectrum.
    Hugs,
    Marla

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    You know what? I was thinking the same thing, that it only causes dry eyes and dry mouth, but I am not a doctor. The neuro should have known better.
    Another thing, do you get real dry sinuses, mine are so dry, that they burn.
    Thank you for your answer, I am going to try Systane.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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