Patient Comments: Sjogren's Syndrome - Describe Your Experience

Please describe your experience with sjogren's syndrome.

Published: June 03

It took 6-7 years to diagnosis since my only symptom was occasional paranoid gland swelling. It would happen while eating (or about to eat) and the extreme swelling would develop within 1-2 minutes. The swelling would go down after a few hours. The final straw was when I swelled up after eating an olive and it stayed swollen for 5 days. I could not open my mouth to eat or drink unless I took a Vicodin. I then insisted my doctor run blood work for Sjögren's and I was correct. Since my diagnosis, I do notice I have very dry lips and skin and the Placniquil makes me not heal when I injure myself.

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Published: May 29

I have had Sjogren's syndrome for a long time. My eye doctor is the one that thought there was something wrong. My eyes were very dry. He had me see a doctor named who specialized in Sjogren's syndrome. At the time I had know idea what that was and had never heard of it. The doctor tested me and told me I had it. My mouth was always dry, my eyes were dry, but I never thought much about it. As I am getting older, it has gotten a lot worse. My eyes are so so bad. They always hurt. They closed the ducks a couple of years ago. I'm always putting drops or ointment, into my eyes. Sometimes I just want to sleep because I can't stand the pain. I really hope and pray know one has to suffer like I do with my eyes to the point were I want to cry. And there doesn't seem that there is anything that can be done. I have been to four top doctors, and they just don't know anymore how to help. My dry mouth is easy: I always carry a drink, use special tooth paste and mouthwash. So that helps.

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Published: May 23

The doctors didn't know what was wrong with me. I was swollen all over for months. When all the swelling went down, my saliva glands were enlarged and I had incredible thirst. My mouth was not producing enough saliva. My eyes also became red and although I used allergy Visine and other products to get the redness out, it always came back. There were headaches and I lost 80lbs in about seven months. It was incredibly scary. Now we knew that this was Sjogren's syndrome. It's not that bad really, considering that I now have to use special toothpastes and special mouth washes. Eye drops help with the redness and I live a very close to normal life. I think the worst part is the headaches and treating that part of the syndrome.

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Comment from: Bnar , 19-24 Male (Caregiver) Published: August 21

Sjogren's syndrome has no treatment. Don't bother yourself with these silly things.

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Published: July 24

I've just received my test results and am waiting for my appointment with a specialist which will be 3 hours drive. I've had skin sensitivity where if I scratch it becomes red and goes away eventually, or I have slight hives now and then. But dry mouth no matter how much water I drink and dry eyes and itchy - but the sort of itch you can't scratch. What makes it complicated is I ruptured my spleen 14 years ago and I'm wondering if its the spleen accident triggering this abnormal reading in my blood test. Or it could be the sever asthma and years of taking various preventative medication that are finally catching up with me. I'm on prednisone for the third time this year (short strong doses) to control the allergy when it becomes severe. Of if its the sever asthma and years of taking various preventative medication that are finally catching up with me. I'm on prednisone for the third time this year (short strong doses) to control the allergy when it's become sever. I'm worried (of course) as I have so little information about what happens to people like me. BTW I'm 39, female. Normally very busy and active and a teacher and professional.

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Comment from: lyn, 25-34 Female (Patient) Published: August 15

I have been experiencing dry eyes this week and I do not know what triggered it. I have been crying so I do not know if that triggered the dryness in my eyes.

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Sjogren's Syndrome - Symptoms Question: What symptoms and signs did you experience with Sjogren's syndrome?
Sjogren's Syndrome - Prognosis Question: What is the prognosis for your Sjogren's syndrome?
Sjogren's Syndrome - Treatment and Diet Question: What treatment has been effective for your Sjogren's syndrome? Have you made any dietary changes, and have they been effective in managing your Sjogren's syndrome?

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