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: S.W., 45-54 Female (Patient) Published: July 24

I have no family history, diagnosed with Sjogren's syndrome 15 years ago. Sixteen years ago I got married in April, ran a triathlon in August, got pregnant in October. I was in above average health/fitness. I got a severe stomach bug in December, 16 years ago and poof, my body just progressively went downhill, and I lost the ability to walk, sit or stand for longer than 15 minutes by that following February. And it's been like this for 15 years. Sjogren's, fibromyalgia and then lupus were the diagnosis. Once again - I've asked everyone in family over and over - there is none of the 58 plus autoimmune diseases in the family. Over the 15 years it's expanded - GERD, Hashimoto's, arthritis and others. My life turned upside down in 3 months after I got a severe stomach virus. And it's not improved. So I have to ask this hoping that researchers actually see this... when you research illnesses and attempt to develop treatment/medicines who or what do you get your information from? Because no one has ever asked me about my illness. And my 15 doctors spend our 20 minutes each... we are not able to discuss the entire illness so I truly hope you are not getting your information from them. Wishers to all that suffer with the illness.

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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: frustratedandsad, 55-64 Female (Patient) Published: September 21

I am 64 years old and have just been diagnosed with Sjogren's syndrome. Now I realize that I have had it for many years. My parotid glands have been rock hard and very painful for 1.5 months. My salivary glands are too. I have virtually no saliva, and my lips and tongue burn like fire. My ear is so painful I am in tears. I am barely able to swallow even super moist chicken with gravy. I have to mash chicken until it is in tiny threads, and can only swallow it with copious amounts of water. My joints stiffen whenever I sit or sleep for any length of time and when I try to stand, once I couldn't even do that. I was just diagnosed with uterine cancer. I don't think that is related though. My eyes are bone dry, tear ducts have been plugged, and I've had numerous corneal abrasions and tears (cornea rips). My skin became so dry, particularly on my legs, that they are scaly like a fish. I already have bipolar disorder, and am depressed most of the time despite medication. And I was just diagnosed with vestibular migraines. I'm having a terrible time coping.

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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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