Patient Comments: Sjögren's Syndrome - Describe Your Experience

Please describe your experience with Sjögren's syndrome.

Comment from: Barb, 65-74 Female (Patient) Published: February 13

I have Sjogren's syndrome. I also have subacute cutaneous lupus. My dry eyes cause much distress toward the end of the day. I have had punctal cautery which had no effect. I have been taking Restasis twice daily for over a year. Recently I bought a pair of moisture chamber eyeglasses on line. Mine fit over my prescription lenses and they have really helped a lot. I can even watch about an hour's worth of TV. I run a cool mist humidifier in the living room and bedroom. My rheumatologist mentioned briefly to find out what I can about patient serum eye drops. Nobody in my area knows how to go about starting this treatment up and running.

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Comment from: Unusual, 35-44 Female (Patient) Published: February 03

I'm not your typical Sjogren's syndrome patient. I was diagnosed a little over a year ago. I do not have dry eyes, joint pain or dry mouth. I suffer from Sjogren's in the brain. It is extremely rare. Over the last year I've taken lots of steroids and now it has quit spreading in the brain, but I do have scarring. I suffer from severe migraines, cannot handle bright lights, and occasionally my left side does not want to work properly. I have lost some fine motor skills. I am continually getting rare side effects from an autoimmune disorder like pyoderma gangrenosum (skin ulcers) and neuralgia.

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Comment from: Mari, 45-54 Female (Patient) Published: January 23

Within the past few years I've been experiencing increased dry eyes, mouth, nose, skin, decaying teeth and approximately two years ago increasing pain in my joints and bones. I was diagnosed with Sjogren's syndrome by my rheumatologist about a year or two ago. The arthritic pain has gotten to the point that it interferes with my daily functioning. As of late, I attribute it mostly to the cold weather. It's unbearable at night. As much as the dry eyes, nose, mouth, etc. affect me, the arthritic pain is the worst. I was prescribed fludrocortisone 0.1 mg but I didn't take it long enough to feel any improvements, only because I'm taking other medications. I was concerned about contraindications. I also opted out of cortisone injections and I'm currently looking for other alternatives, preferably holistic. In the meantime I take ibuprofen, soak in warm Epsom salt baths, massage and rub my joints with Mentholatum and use heating pads. It's after 2 am and the only reason why I'm still awake is because of the pain throughout my entire body. I'm trying to be hopeful, but the chronic pain is taking its toll physically and mentally.

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Comment from: Helena, 25-34 Female (Patient) Published: November 21

I am 34 years old, and I was diagnosed with Sjogren's syndrome 10 months ago. It was very bad with my health, because all the symptoms I have I believe for sure I have it already for 4 years. I have red dry eyes, dry mouth, bone pain, fatigue, and I thought often my joints were out of place. I went often to a massage chiropractor, to eye doctor, and family doctor. Finally 10 months ago one eye doctor told me he thought it was Sjogren's, so my doctor tested, and yes, it was. I couldn't handle the drugs. I badly needed help, so we went to Mexico; there you get the best cure. I am thankful for that.

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Comment from: Murriel, 45-54 Female (Patient) Published: October 10

I was diagnosed with Sjogren's syndrome more than 10 years ago, sort of by accident. I was seeing a rheumatologist for joint pain and happened to mention that I had my tear ducts plugged due to having huge tear ducts. They ran the Sjogren's tests and I was diagnosed. At first, I had more eye trouble and have used Restasis for years and I find that wearing contacts holds the moisture in. Then I had more mouth trouble and used to have at least 1 abscess a year. But since I stopped traveling for work, I've been stable. I'm allergic to Plaquenil and all NSAIDs and I didn't have luck with Salagen. So I just deal with it.

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