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I Was Diagnosed With Sjogren's Syndrome Yesterday


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I have a good friend with Sjogren's and Crohn's. She got the Sjogren's diagnosis first and then started having terrible diarrhea which led to the Crohn's diagnosis. She mainly just takes immunosuppressants--prednisone and humira.

Good luck to you. I hope you can find a tolerable treatment. I know my friend had a rough time finding medications that she could take that didn't make her feel worse.

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Rich, I'm sure hoping this will make a difference for you. Finding the pieces of the puzzle and getting things put together makes for a lot more peace of mind. Sort of lifts a heavy burden - because, now you are starting to figure things out. Hoping that there will be some sucess in your treatment, now that you know more what you're dealing with.

Issie

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Guest Alex

Rich,

keeping my fingers crossed for you.

Hope you'll be able to figure out the best course of treatment, now that you know a bit more about whatever it is that you're facing.

Keep us posted.

Best of luck,

Alex

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Seems strange to say that it is great to have a dx like this, but guessing your quest to find primary cause is closer??

I admire your strength to not give up Rich!!

:)

This also gets me to thinking about some things have seen Issie post in regards to auto immune at the core of a lot of this.

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I had dry mouth but I always chalked it up to pots because I never had it before my pots flared up bad. And My eyes aren't dry at all during except in the morning when I wake up. I still have to go for a salivary scan and eye testing to see how bad the damage is..

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Which type of doc did the biopsy and diagnosed it for you?

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I had dry mouth but I always chalked it up to pots because I never had it before my pots flared up bad. And My eyes aren't dry at all during except in the morning when I wake up. I still have to go for a salivary scan and eye testing to see how bad the damage is..

Interesting. We have similar symptoms and I've always had dry mouth and eyes since this started. Maybe I should be tested. Of course I couldn't even get a skin biopsy for SFN so I doubt I can get anything else here.

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I didn't have a lip biopsy - I had a blood test ordered to detect Sjorgren and it was negative. I do have AAG but, not Sjorgren - odd because I have the exact symptoms of Sjorgren. Is the lip biopsy the most definitive test?

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Well having one of either of the two Sjogren's antibodies is the most definitive. If you are negative for them like I was, then they do three other test. They do a salivary scan, eye test and biopsies. There are 2 types of eye tests; one for tear production and the other for dry spots. They have two types of salivary scans. And usually they do both or either a lip biopsy or a parotid biopsy. Out of these 3 types of test the biopsy is the most definitive. So I would say many ppl classified as AAG actually are seronegative other autoimmune disease. In a study Mayo published about the outcome of 6 AAG patients half were seronegative AAG antibodies, yet the same therapy helped those patient who were negative and Mayo hypothesized that they probably have some other underlying autoimmune disease. What I don't understand is why other autoimmune cause neuropathies isn't FDA approved for the same treatments. Even AAG isnt approved for IG and Plasma yet..

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