Patient Comments: Sjogren's Syndrome - Prognosis

What is the prognosis for your Sjogren's syndrome?

Comment from: Lavender grace, 55-64 Female (Patient) Published: July 21

I discovered I had a hiatal hernia, over a year ago. I've always had digestive problems and sometimes I would bloat up so much I couldn't breathe. I take acid reflux medicines and lots of Gas-X. Sometimes I feel like my heart is skipping beats because I'm so bloated! If I lift anything heavy, the next day my back and the side of my ribs hurt and I can hardly breathe. I'm a care giver and I think it's causing me a lot of stress. I feel so depressed.

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Comment from: kh, 45-54 Female (Patient) Published: August 09

I am 52 years old. I have just recently been diagnosed with Sjogrens'. I most noticed the painful joints after inactivity. Sometimes I can hardly walk. I have some dry eye problems but not the mouth. I did have some shortness of breath while lying down. Walking daily and rest seem to help me.

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Comment from: Jorika, 45-54 Female (Patient) Published: March 11

In 1990, at 27 years of age I was diagnosed with lupus and secondary Sjogren's after tears totally dried up, contracted keratitis and later keratoconus. In 1995, eye problems continue, as well as 1st signs of dry mouth symptoms and also serious vasculitis. Diagnosis was changed to primary Sjogren's. In 1997 M-band was detected in my urine (Bence Jones protein test) and I was referred to oncologist for bone marrow biopsy. I was diagnosed with monoclonal gammopathy of unknown significance (MGUS). In 2003 I had pneumonia, lung infections and pulmonary embolism. After lung biopsy subsequently diagnosed with multiple myeloma (IGg 2A). In 2004 January they started chemotherapy as preparation for successful autologous stem cell transplant in June. High-dose chemotherapy resulted in cataracts on dry eyes. In 2005 lens implants were needed in both eyes. In 2011 I had retinal detachment in right eye. Most vision was saved after six operations. In 2013 I had partial detachment in left eye. In 2014 I am celebrating 10 years after cancer transplant and am still in remission.

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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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