Patient Comments: Sjögren's Syndrome - Describe Your Experience

Please describe your experience with Sjögren's syndrome.

Comment from: josicat, 55-64 Female (Patient) Published: May 09

I take 200 mg of magnesium a day and a B12 vitamin. It has helped with the brain fog and the fatigue that goes with Sjogren's syndrome. I only have a mild case of it. I was diagnosed in 2016. Probably have had it for 10 plus years.

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Comment from: DebThread, 55-64 Female (Patient) Published: April 04

As per my luck, I listed most of the 20 diseases I have, not counting some that are symptoms of brain fog, like major short term memory loss and all the rest. I guess what I put was too long so after 30 minutes of typing it went away. I would like to know if anyone else has problems with aggression. Not hitting, but saying or emailing mean things. I know better but it still happens. I don't know if this is the diseases or any of the 20 plus pills I take for all my illnesses. I am in my worst Sjogren's flare ever. I was diagnosed 5 years ago, but I think I have had it longer. All the things that go with brain fog are horrible right now. Thanks.

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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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