Patient Comments: Sjögren's Syndrome - Prognosis

What is the prognosis for your Sjögren's syndrome?

Comment from: just me, 55-64 Female (Patient) Published: October 22

I have quickly developed extreme pain in my eyes, eye lids and all around my eyes. I was diagnosed with Sjogren's syndrome a few months ago. The pain is getting intolerable. My general physician put me on steroid pack and as soon as I finished it the pain is back with a vengeance. Because I am diabetic the medications are very tricky and I have to be cautious, which I am. To cut a long story short, I am waiting for my general practitioner to re order steroids.

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Comment from: Lori, 45-54 Female (Patient) Published: July 18

I'm 50. My sister died at age 41 with Lupus/CREST/Sjogrens. I have it too, but i think there's a mild kind and a aggressive kind of Sjogrens. I have severe consequences of this one. I have RA instead of Lupus, but the Sjogrens has cost me my teeth and the function of my salivary glands, i also had my tear ducts (4) burned shut to keep the moisture in. I want to tell you all that the removal of my teeth was hard to face but i'm glad i did. i spent thousands trying to save them-much pain. i should have done it sooner. i say this because it stopped the inflammation of my mouth. i would wake up spitting out my teeth that my body dissolved during the night-teeth that i had payed much money just the month before to get root canals on. i'm trying to save money for implanted teeth because the dentures cause inflammation on the roof of my mouth. the lectures from uninformed dentists about brushing (before the Sjogren's test) were frustrating because i know i took great care of my teeth. I know that on the days where everything hurts-rest and quiet works, but i have to work so i don't get to sit around.this aggravates everything. a cure would be great. too late for my dad and sister who both died at age 41.thanks for the spot. lori

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Comment from: mumof2, 25-34 Female (Patient) Published: May 01

I am 25 years old and I have just finally been diagnosed with Sjogren's after five years of hell with chronic fatigue being the worst of the symptoms. I also have many other symptoms, like an extremely dry and itchy vagina that tears even when just wiping after going to the toilet, recurrent esophagitis and pangastritis, hip pain, itchy eyes, dry lips that bleed all the time, bowel problems, rash on face, chest and knees whenever I go in the sun – just to name a few. But I'm glad to know I'm not the only one. My advice is when you know something is not right with yourself but the doctors keep just brushing you off, keep at them, because you know your body better than anyone.

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Comment from: byjoan, 75 or over Female (Patient) Published: March 01

I was diagnosed with Sjögren's two years ago. I hate it and how it has changed my life. I was healthy, active, sports loving, happy person. Since then It took my six months to get my tears flowing again, I lost nine teeth and painfully had them replaced, and worst of all, both of my feet are numb for good. I was an avid skier, now my loss of balance has curtailed the one thing I love, and I feel depression overtaking me. I'm about to start physical therapy but wonder if the fatigue factor will allow me to make progress.

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Comment from: tootsie1, 45-54 Female (Patient) Published: December 11

After years of running to tons of doctors I was diagnosed with Sjogren's syndrome. I have had teeth pulled due to pallet inflammation. I was told that I had a virus in my mouth and was handed psychiatric cards by my doctor. I suffer from fatigue, sore joints, swelling hands, nauseousness, headaches, itchy skin, vertigo, dry mouth, problems swallowing, small red bumps on my skin, no sexual appetite, weight gain and dry nasal passages. I also experience rib pain, sore salivary glands and have Hashimoto disease. I can not tolerate taking the full dose of Hydroxychloriquine. I find that I have no quality of life. I had been in remission but now have had a big flare up for over a year.

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Comment from: Ellen, Female (Patient) Published: October 29

A family member was told by a doctor that Sjögren's Syndrome is only found in people of Swedish decent. Is this true? I'm curious because I have had Hoshimoto's Thyroiditis for years, and my sister has suffered with a dry-eye condition for which she has been diagnosed with Sjögren's. Also we have other thyroid issues as well as Klinefelter's Syndrome in the family. We're not aware of any Swedish ancestry.

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