Patient Comments: Sjogren's Syndrome - Prognosis

What is the prognosis for your Sjogren'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: Merl, 65-74 Female (Patient) Published: April 23

I was diagnosed with Cancer of the limp glands as my doctors said about 30 years ago I was sent to Brisbane to have many tests. Pleased to say they came back clear. Then I was sent to a doctor who after many tests again he told me I had Sjogrens Syndrome. The Doctors in my area had never heard of it .I was rung by many doctors for the symptoms that I suffered as they thought their patients may have it also and they asked if there patients could ring me to find out the suffering I was having. I suffer with many pains in my joints and have had one knee replaced with the other to be done in about 6 months. Reflux in my case in my case I have been taken to hospital with a suspected heart attack .The pain is so hard to accept. Yes my joints are not good and my eyes give me trouble and dry mouth for which I use eye drops and drink lots of water. So as you can see after 30 years I was a test pig all those years ago. I have learnt to live with it and suck lots of Mylanta tablets for the pain that is always in my chest 30 years is a long time I have to live with it.

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Comment from: kimw, 35-44 Female (Patient) Published: March 30

I am 39 years old. I was diagnosed with Sjogren's syndrome 2 years ago. My Rheumatologist said that I had actually had it for over 10 years. I had a saliva gland removed in 2001 due to a blockage. He was able to get those biopsy results and said I had it then. I have lots of teeth problems. They decay "oddly". I actually got diagnosed because I started having extreme joint pain, especially in my hips. My blood work came back that I had lupus and rheumatoid arthritis. They sent me to a Rheumatologist and he diagnosed the Sjogren's. I have extreme dry mouth and lips, GERD, fatigue, joint pain and some dry eye issues but not terribly. I will sometimes do really well for several months and then have a flare and hardly be able to move. I take Plaquenil daily, Prednisone during flares, Prilosec and Zantac for GERD, and Tizanidine for the muscle cramps and to help me sleep. I am concerned because I now have a recurring pain in my right abdomen near my rib. I am going for a cat scan in a couple of weeks for that. Hope it's nothing. My Rheumatologist thinks I am doing well, but I sure don't feel like I am.

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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: 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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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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