Patient Comments: Sjogren's Syndrome - Prognosis

What is the prognosis for your Sjogren's syndrome?

Comment from: Zc1995, 25-34 Female (Patient) Published: January 30

My rheumatologist told me that the prognosis is very good. I am 34 and was diagnosed 1 year ago. I have suffered with dry nasal passages about 10 years. A couple of years ago, There were times that I was so stiff and sore that I could barely walk open doors or write my name. After some blood work, I was thought to have lupus but was diagnosed with Sjogren's. I take Plaquenil daily, Zyrtec for my allergies, Protonix for GERD, 800 mg Ibuprofen and Tramadol for pain. Every day is a struggle but I deal with it one day at a time.

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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: pk, 55-64 Female (Patient) Published: September 06

I was diagnosed with Sjogren's syndrome about 15 years ago. I go regularly to my doctor. I drink a lot of water and exercise regularly. I have been gluten-free for more than 10 years, and it helps my digestive system. I take Evoxac medication to help jump start fluid-producing glands as well. My advice is to never give into the disease, fight, go on with your life; move past the pain and fatigue.

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Comment from: hope, 55-64 Female (Caregiver) Published: August 30

I was diagnosed with Sjogren's about a year ago. I was age 60. I thought I had arthritis as my body ached. I would get very tired and my mouth and eyes felt dry. I tried several medications but had an allergic reaction so decided to eat very healthy and I started taking vitamin B, Omega 3's, Vitamin D, and vitamin C. I am more energetic but still get tired at times. I was able to retire early and it was a blessing. I do not think I could make it through the day now. I have now developed high blood pressure. I always had low to normal blood pressure. I have a cough sometimes and allergies. I feel a shortness of breath at times as well. My daughter has been diagnosed with Lupus. I wonder if she developed it from me having an autoimmune disease. We take it one day at a time and can only pray that there may be a cure one day. Wish you all luck and God bless.

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