Patient Comments: Sjogren's Syndrome - Prognosis

What is the prognosis for your Sjogren's syndrome?

Comment from: barb, 55-64 Female (Patient) Published: December 09

I just got diagnosed with Sjogren's syndrome through the lip biopsy. I have had a dose of IVIG infusion injection that nearly killed me. I was in the emergency room, had to get fluids and pain killers. I had the absolute worse headache known to man, like tidal waves through my head, couldn't eat or drink, and severe vomiting, for 4 days. I cannot go through that again. I also have small fiber neuropathy and arthritis. I am in pain every day, trying not to let it take me down; some days are rough!

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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: 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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