Patient Comments: Sjögren's Syndrome - Prognosis

Question:

What is the prognosis for your Sjögren's syndrome? Submit Your Comment

Comment from: madrw, 45-54 Female (Patient) Published: April 10

I had extreme lower back pain, swelling of the stomach, itching and burning around the scorpion bite area, loss of appetite, strong headaches, numbness in arms and legs, and cramping in legs and knees.

Comment from: Lane, 65-74 Female (Patient) Published: November 15

I have gone the diet way mostly. Things work well for a while and then they don't work as well. Diet, for example; prunes, prune juice, whole wheat bread, bran flakes. I tried prune juice on an empty stomach, wait 1/2 an hour, then apple juice. That was great at first. Then we got some ginger tea form Africa. Wow. I drank about a cup and I started to hear gurgling in the intestines. Then about 2 hours later, yes I am not kidding you, 2 hours I had a good bowel movement. Today seems to be doing well too. I would not follow the second day with more tea until you find how this affects you.

Comment from: 35-44 Female (Patient) Published: April 22

I have been having fever and pain since last two days and currently my mouth taste is virulent and I have pain all over my body. My body temperature is not so high and pulse rate is normal, but I feel blood pressure is low.

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.

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.

Comment from: Worried daughter , 55-64 Female (Caregiver) Published: July 23

My mother had Sjogren’s syndrome. She also was diagnosed with a rare lung cancer last year. She got cancer in the lymph nodes. Small nodules around her brain were later found before her death. Sjogren’s caused her to have severe dry mouth and eyes. She had a dry cough also. Her body ached all over. But till 65 she wasn’t ever sick and was very healthy. She worked and walked daily up until the cancer took over her body. I as her daughter am worried I too will end up having Sjogren’s.

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!

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.

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.

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.

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.

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.

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.

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.

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.

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.

Comment from: tootsie1, 45-54 Female (Patient) Published: December 11

After years of running to tons of doctors I was diagnosed with Sjogren's syndrome. I have had teeth pulled due to pallet inflammation. I was told that I had a virus in my mouth and was handed psychiatric cards by my doctor. I suffer from fatigue, sore joints, swelling hands, nauseousness, headaches, itchy skin, vertigo, dry mouth, problems swallowing, small red bumps on my skin, no sexual appetite, weight gain and dry nasal passages. I also experience rib pain, sore salivary glands and have Hashimoto disease. I can not tolerate taking the full dose of Hydroxychloriquine. I find that I have no quality of life. I had been in remission but now have had a big flare up for over a year.

Comment from: Ellen, Female (Patient) Published: October 29

A family member was told by a doctor that Sjögren’s Syndrome is only found in people of Swedish decent. Is this true? I'm curious because I have had Hoshimoto's Thyroiditis for years, and my sister has suffered with a dry-eye condition for which she has been diagnosed with Sjögren’s. Also we have other thyroid issues as well as Klinefelter’s Syndrome in the family. We're not aware of any Swedish ancestry.

Comment from: disney950, 55-64 Female (Patient) Published: April 23

I am 61 and was diagnosed with Sjgrens approximately 5 years ago, although I've had many of the symptoms for over 10 years (severely dry mouth and eyes, pain in my right hip which makes it impossible to walk more than 10 minutes, cold hands and feet, so cold that it's often difficult to move them, and occasional lung pain. My mouth is so dry that I have to take a sip of water with each bite of food so I can swallow it. I also experience pain in the lymph nodes under my left arm and I seldom have energy. Fortunately I have a loving husband who encouraged me to retire early although two years of being retired hasn't helped much. I pray for guidance daily but haven't found it yet.

Comment from: newbie, 35-44 Female (Patient) Published: March 07

I was diagnosed a week ago today with Sjogren's syndrome. I have so much joint pain especially from my hips down. I am beyond exhausted/fatigued, I've lost a lot of my hair, and these crying episodes just need to stop. I've started on a mixture of medications to see what will help, I go back this morning to my doctor! Good luck to everyone! We can learn together!

Comment from: vick, 45-54 Female (Patient) Published: February 22

Well I’m not sure when my Sjogren's syndrome actually started. The pain that sent me to see a doctor was in my elbow. Then it went to my knees and feet and fingers. I have also had dental issues -- when swallowing, the left side of throat hurts constantly. I’m now having problems with chewing some foods. But the worst is my finger tips and toes. They are purple most of the time and they hurt so bad and turn black. You can actually see the dead tissue under my nails. Some days I feel like they are just going to pop open they hurt so badly. Makes it hard to walk or even do my everyday things. My fingers hurt just to touch anything. And sleep, what’s that’s? I sleep maybe three to four hours at a time. I couldn’t tell you what it would be like to sleep all night.

Comment from: sugurappa, 45-54 Male (Patient) Published: March 14

I am suffering from fever followed by severe body pain and chills for two years. Six months ago, I lost taste on the left side of my tongue, and my left check went numb. Two months later, it was diagnosed as Sjogren’s syndrome by an immunologist and I am under treatment with HCQS tablets till for a few months.