Patient Comments: Sjögren's Syndrome - Describe Your Experience

Please describe your experience with Sjögren's syndrome.

Comment from: Tybee, 75 or over Female (Patient) Published: July 22

I have not been diagnosed with Sjogren's syndrome, but I have been through all the blood work for rheumatoid arthritis (RA) and I was told that everything was okay, nothing to be concerned about. But I do know that my RA test was 28 and the high range for that is 14. I've experienced problems with dry mouth and dry eye for years now, along with depression. I drink water and tea all day and take to bedside. My mouth, tongue and throat are so dry that I am awakened at night and my eyes are closed when I wake up in the morning - I open them with my fingers.

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Comment from: FlaGurl, 45-54 Female (Patient) Published: June 04

I was recently diagnosed with Sjogren"s syndrome and my feet are very itchy and peeling like crazy. I am also sun sensitive which has only gotten worse since I"m on generic Plaquenil, if I get too much sun I"ll be sick for 2-3 days as if I have a really bad burn although I really am not burnt, just blotchy.

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Comment from: susan, 55-64 Female (Patient) Published: May 21

I am 55 years old I had Sjogren's syndrome for 2 years now. I feel that it is getting worse. I started with the dry mouth and dry eyes but now my elbows, hips, knees, and fingers hurt. My medications do not work all the time. At night I get up several times so I can drink some water because my mouth so dry. I am also getting very depressed.

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Comment from: Mspink, 45-54 Female (Patient) Published: April 22

I was diagnosed with Sjogren's disease and it is secondary to my rheumatoid arthritis. My symptoms are dry eyes, dry mouth, and dry nose. I am on methotrexate, Plaquenil and gabapentin and it seems to be working quite well.

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Comment from: smithjoy, 55-64 Female (Patient) Published: March 14

I also have systemic lupus in addition to Sjogren's syndrome. I wonder if Sjogren's can cause dry feet as well as constant itching of the bottom of the feet as well as around the toe nails. The top layer of skin on my feet has also peeled.

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Comment from: Gaynor, 75 or over Female (Patient) Published: February 26

I have dry eyes and mouth due to Sjogren's syndrome. I use Systane eye drops at night only and Biotene at night as well. If I am talking a lot on the phone I get a dry throat, but I am ok otherwise.

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Comment from: angelaamy, 65-74 Female (Patient) Published: January 03

I had swollen glands and diagnosed as a mild case of mumps as a child, as a teenager and as an adult. I was finally correctly diagnosed with Sjogren's syndrome, I don't know if I ever had mumps as a kid or was exposed. I also have fibromyalgia, arthritis and low thyroid. Nothing is fatal but if it's a 'learn to live with it' disease I probably have it (sarcasm, my stress reliever). I use OTC moisturizing eye drops and drink water all the time. I am on pain medications. I just wish could find a way to reduce the 'chipmunk cheeks', hate having fat face!

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Comment from: love2sing55, 35-44 Female (Patient) Published: October 18

I just got diagnosed with Sjogren's a couple of weeks ago. I was having extreme fatigue, muscle tightness, spasms and shooting nerve pain. I also have notice eyes and mouth more dry. Also TMJ and arthritis issues. I'm on new medications, gabapentin and hydroxychloroquine (generic for plaquenil). This seems to be helping.

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Comment from: sblogg, 45-54 Female (Patient) Published: April 17

I probably had symptoms of Sjogren's for about seven years, but only realized what I had a year ago when I also started to get rheumatoid arthritis. I went through an emotional whirlwind last year, mostly due to pain and disability with the RA. It has definitely affected my personality. I can get very down and have to fight that all the time. It is important to accept it and to take it easy. My life has been very stressful with a demanding job and living in a developing country. I am learning to make my life less stressful but have a long way to go. The most difficult part of the disease is that it has impacted my relationship. Sex is painful, but my husband has been very supportive. I take 15 mg methotrexate every six days, and it helps, but I can still have bad days. Now, though, most are good. I swim every day, my physiotherapist has fixed my shoulder, and I have a great diet free of sugar and alcohol. I try to stay positive. I am getting on top of it.

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