Patient Comments: Sjogren's Syndrome - Describe Your Experience

Please describe your experience with sjogren's syndrome.

Comment from: wisegirls3, 55-64 Female (Patient) Published: October 24

I was diagnosed with Sjogren's syndrome when I was 19. I am now 55. I have a great rheumatologist who sees me every eight weeks. I take hydroxychloroquine twice a day, use eye drops a lot, and drink water constantly. I had to have my left parotid gland removed when I was 20. I was diagnosed with a tumor in my sinus cavity in my 42nd year. My doctor had a biopsy done and I was diagnosed with a rare form of cancer called amyloidosis. They took a bone marrow sample and did a total skeletal scan and did not find it anywhere else in my body. The tumor is still there because it envelops the bone beneath my eye. They cleaned out everything in my left sinus cavity to allow for better airflow. Now I am struggling with my legs and feet swelling, keeping my vitamins B12 and D up and my liver counts down. At times I am exhausted but for the most part I live a fairly normal life.

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Comment from: Sarah, 65-74 Female (Patient) Published: October 22

I was diagnosed with SLE (systemic lupus erythematosus) about two and a half years ago. Recent lab tests also showed Sjogren's syndrome. I've had eye issues for two years, with the vitreous gel bursting and multiple floaters in both eyes. My vision started to diminish and my left eye vision was blurry. I saw one retina specialist and he told me I may eventually need surgery as a "membrane" was growing over the retina. I went for a second opinion, and this eye doctor prescribed Restasis (they have a generic in Canada), and preservative free OTC eye drops. She said "see you in 4 months. Having many autoimmune diseases is a tough way to live; especially if you're 70 years old. Every day is a struggle!

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Comment from: Jen, 65-74 Female (Patient) Published: October 18

I was diagnosed with Sjogren's syndrome in 2009 after severe dry eyes. I take Restasis 4 times a day as well as many other over-the-counter drops. I have a dry throat and trouble swallowing. I am very constipated and use milk of magnesia daily. I only go to an internist. I refuse to take prednisone. My rheumatoid factor is 192 and climbing yearly. So far I only have trigger finger. I have lost weight since I was diagnosed. I exercise daily. I refuse to give in to this. I worry about my sight since my eyes are inflamed weekly.

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Comment from: breakaleg06, 45-54 Female (Patient) Published: January 26

I was diagnosed with Sjogren's syndrome 2 years ago. I have been suffering from dry mouth horribly since I've gotten a cold a couple of weeks ago. I tried taking Benadryl to help clear up my nasal passage. I couldn't stand the way my mouth was overly dry.

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Comment from: MG, 35-44 Female (Patient) Published: October 02

I was just diagnosed with Sjogren's syndrome and lupus. I am concerned because I live overseas and I'm not sure If I am getting enough information or if I am feeling the way I'm supposed to. I feel that I have no one to ask. I feel extremely lethargic most of the time. I started taking cortisone, a small dose, and I feel better. I have a constant swollen sensation in the glands in front of my ears. This is very bothersome.

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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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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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