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Does anyone have Sjögren's lupus?

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#1 awesomed



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Posted 18 March 2009 - 05:43 AM

Hi. I am new and am looking for support for Sjögren's lupus. Just let me know. Thanks.

#2 Jeannie McClelland

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Posted 18 March 2009 - 05:58 AM

Hi Awesomed,

Welcome to the Forum. I hope we can help you find the support you are looking for.

Do you mean Sjögren's accompanying Lupus? We have have pages on Lupus and Sjögren's. There is a lot of good information on both pages.

I know we have a lot of members with Sjögren's accompanying other autoimmune disease and I think we also have a fair number who have Systemic Lupus Erythematosus. I'm sure they'll all jump in to help - we're a great group that way.

Best wishes,
Jeannie McClelland
(Retired) ISN Director of Support Services
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International Scleroderma Network

#3 betty32506


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Posted 18 March 2009 - 10:05 AM

My rheumatologist said I have Sjogren's because I have sores in my mouth. She has been very reluctant to name any diagnosis. From what I read this is par for the course. I probably have lupus and sclero and some others. To my knowledge no tests were done specifically to isolate Sjogren's. She prescribed Evoxac and I can't tell if it helps. I sure would like to find something that does help.


#4 awesomed



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Posted 19 March 2009 - 04:11 AM

Hi. Thanks so much for getting back to me. There is a specific blood test for Sjogren's and there are cumulative diagnosis markers. There are 12 points. I have been sick for 10 years and symptoms come and go. So maybe you feel this way: jaw/ear pain and dental problems, difficulty swallowing, nausea that comes and goes, ankle/foot pain and swelling.

Well that's some stuff but anyway all that doesn't matter unless they have a new drug to treat you. I am on prednisone and methotrexate. There is nothing new I can take so for now I was wondering how everyone was coping with their symptoms. Thanks.

#5 Peggy


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Posted 19 March 2009 - 05:16 AM

I also have Sjogren's in addition to the other 5 autoimmune diseases that I have. I have terrible dry eyes and mouth and take evoxac (sp?) and a special mouthwash that I use. One thing that I've never found out is what other symptoms are from the Sjogren's. All I know is that my first rheumatologist doctor was more concerned about my Sjogren's than she was the sclero. I know she was concerned about the possibility of cancer and then that was increased because I did the cytoxan treatment and then had to discontinue that due to inter-systitis of the kidneys. Now I'm on Cellcept and that seems to be doing OK. The prednisone was the first thing they tried when initially diagnosed and that didn't work at all! I had such horrific reactions to it.

Warm hugs,