Patient Comments: Sjogren's Syndrome - Describe Your Experience

Please describe your experience with sjogren's syndrome.

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: 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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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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