Unlocking the Mystery of Sjögren's Syndrome

Discussion in 'Fibromyalgia Main Forum' started by JLH, May 12, 2006.

  1. JLH

    JLH New Member

    Unlocking the Mystery of Sjögren's Syndrome

    By Heather Bancroft
    Sjögren's Syndrome Foundation

    Sjögren's (SHOW-grins) syndrome, an autoimmune disease in which the body’s immune system mistakenly attacks its own moisture-producing glands, often starts out as mystery. In fact, because of the variety of symptoms, it takes slightly more than six years, on average, to diagnose a Sjögren's syndrome patient.

    Andrea Shafer was in her late 20s when she started having symptoms of Sjögren's. She noticed occasional pain in her legs and petechiae, a rash of red dots under the skin, on her legs. After a couple years of intermittent symptoms, she visited her family physician and was referred to a rheumatologist when her blood work suggested an autoimmune disorder. Eventually Andrea presented one of the more tell-tale signs of Sjögren's—dry eyes. In the end, it took Andrea about ten years to get a diagnosis of Sjögren's syndrome.

    Because diagnosis can be such a challenge, Andrea says that she “would tell people to pursue that journey of connecting with the right provider, no matter how long it takes, no matter how many doctors you have to go to, even if you have to spend some of your own money to do it.”

    Symptoms of Sjögren's syndrome vary, but the hallmark symptoms are dry mouth and dry eyes. “People think of saliva as a trivial substance and tend to take it for granted, but when it is absent, it can have some life-altering consequences,” says Frederick Vivino, M.D., a rheumatologist and director of the University of Pennsylvania Sjögren's Syndrome Clinic in Philadelphia. Patients may have trouble talking or may have to alter their diets to avoid spicy foods and use gravies to moisten drier foods. Severe dental decay can also occur. “With dry eyes, people often complain of a sandy or gritty feeling. Imagine what you feel like when you’re walking on the beach on a windy day and can’t quite get the sand out of your eyes,” suggests Vivino. Other common symptoms include dryness of the skin, lungs, vaginal tissues, sinuses and gastrointestinal tract; joint and muscle pain; swollen glands; chronic fatigue and numbness.

    Often times Sjögren's symptoms may come and go or don’t seem severe enough to warrant a visit to the doctor. Patients may talk to their dermatologist about a rash or their ophthalmologist about their dry eyes, but because the physicians are not interfacing or may be unfamiliar with Sjögren's, it may take a while for the pieces of the puzzle to come together.

    The Sjögren's Syndrome Foundation (SSF) estimates that as many as four million Americans have Sjögren's syndrome, which affects women nine times more frequently than men. “It’s really a major women’s health problem that is largely being ignored by the medical community,” acknowledges Vivino. “In the future, I’d certainly like to see a greater emphasis in the medical and dental school curriculums on the disease and its manifestations.”

    One of the obstacles to diagnosing Sjögren's is that there is not one simple test to identify it. Fortunately, within the past two years there has been a set of objective criteria developed to identify Sjögren's. Through subjective and objective measures which include patient interviews, blood work, a lip biopsy and tests that determine salivary and lacrimal (tear) function, doctors are able to determine if patients meet four of six criteria to make a diagnosis of Sjögren's.

    The severity of symptoms among Sjögren's patients varies almost as much as the symptoms themselves. For some, their symptoms are so severe that chronic fatigue or the inability for those with dry eyes to work in front of a computer forces them to leave their careers and go on long-term disability. Shafer, 43, describes her condition as more of a nuisance. “It hasn’t stopped me from doing what I normally do, but, for instance, when I go to bed at night, I feel like I have a million things to do.” This routine includes the application of eye ointments, taking vitamins for her eyes and an inhaled steroid, as well as Plaquenil, an anti-malarial medication which relieves fatigue and joint and muscle pain in many Sjögren's patients. Meticulous tooth brushing, flossing and fluoride applications also are important parts of the bedtime routine.

    Kim Vaughn, a 45-year-old mother of two, has had numerous health problems since being diagnosed with Sjögren's syndrome fifteen years ago. In addition to suffering from mini strokes, arthritis and depression, she has had to have surgery on her sinuses as a result of fungal infection caused by dryness, and has to have her teeth cleaned every two to three months because of the decay caused by her dry mouth. “It’s more than dry eyes and dry mouth. It’s systemic—it affects your whole body,” she says.

    Vaughn has not slept a full night since learning she had Sjögren's, and finding the energy to meet the needs of her 10- and 15-year-old sons has been one of the hardest things for her. “Every day brings its own set of challenges, because I don’t know how I am going to feel. It‘s frustrating to have to take a nap in the middle of the day when there are so many other things you could be doing.”

    Vaughn, who is managing her symptoms through exercise and medication, acknowledges that there are many promising advancements on the horizon for patients, but admits that knowing that she is at increased risk of non-Hodgkin’s lymphoma scares her. Approximately one in 20 of those with Sjögren's syndrome will develop lymphoma, the majority non-Hodgkin’s lymphomas. Additionally, about 50 percent of Sjögren's patients have another autoimmune disorder like lupus or rheumatoid arthritis.

    The exact cause of Sjögren's is unknown but it’s believed that people inherit genetic tendencies to develop an autoimmune disease and that environmental triggers, such as a virus, bacteria, or even chemical exposure could start the disease process. Sjögren's is a chronic disease, meaning that it lasts a lifetime—so treatments are designed to manage the symptoms, not address the underlying cause.

    According to dentist Dr. Philip Fox, president of the SSF, there are now three prescription medications approved for use with Sjögren's, which include two drugs that stimulate salivary production and one to improve tear function. Other treatments include an exercise regimen, procedures to close ducts through which tears escape to retain moisture, over-the-counter moisture replacement products, aspirin and other non-steroidal anti-inflammatory drugs, steroids, and immunosuppressant drugs. Fox anticipates that the next five years in Sjögren’s research will be very exciting, “In the meantime, there are a lot of simple things one can do to minimize symptoms.,” he says. “These are detailed in The Sjögren’s Syndrome Handbook, a publication of the Foundation.”

    For more information on Sjögren's syndrome, call the Sjögren's Syndrome Foundation at (800) 475-6473 or visit www.sjogrens.org.

  2. Hope4Sofia

    Hope4Sofia New Member

    In my last blood test we tested for autoimmune issues and nothing other than an elevated TSH and Sed rate showed up. But I was shocked because I have the symptoms of Sjogrens.

    My eyes feel like sand on a daily basis. I keep eye drops close by and even that doesn't help much at night when it's really bad.

    One doc told me that that is just another FM symptom and blew it off. Well symptoms come from something!!!

    I have another doc working on my case now and he has ordered A LOT more testing. Hopefully he is able to find better answers.

    I will make an appointment with an optomitrist. Do I need to go to a certain specialist or can any opt test for it?

    Thanks for this post!

  3. usanagirl

    usanagirl New Member

    By Dr. Ray Strand, M.D.

    Sjogren's Syndrome

    Sjogren’s syndrome is a chronic, slowly progressive autoimmune disease, which is characterized by lymphocytic (type of white cell) infiltration of the salivary glands of the mouth and the lacrimal glands of the eyes. This is why the primary clinical symptom is dryness of both the mouth and the eyes. The parotid glands and other salivary glands may become enlarged. These symptoms can be present years before the disease is fully manifested or diagnosed. Patients can have difficulty swallowing their food, talking for any length of time, and complain frequently of dry, scratchy eyes. These patients can have other problems involving the lungs, vascular inflammation, kidney problems, and they may even develop malignant lymphoma. This disease can take a relatively benign course or may very aggressive.

    Sjogrens remains fundamentally an incurable disease. This makes it imperative for patients with Sjogrens syndrome to do everything possible to build up their body’s natural defenses. This is why I believe that an aggressive nutritional supplementation program is essential. The best way to build up the body’s natural immune system, natural antioxidant defense system, and natural repair system is via nutritional supplementation.

    I was taught in medical school that autoimmune diseases were the result of an over active immune system since the body was essentially attacking itself. Consistent with my training, almost all of the medical therapies that physicians offer patients with an autoimmune disease are based on this premise. This is why most of these patients are placed on chemotherapeutic medications, which primarily suppress the immune system. Medications like Methotrexate, Plaquinil, and Immuran are just a few of the potent medications that are used. Corticosteroids like Prednisone are also used not only because of its strong anti-inflammatory qualities but also because they suppress the immune system. However, in MS these medications have not shown much success.

    Since specializing in Nutritional Medicine, I have seen amazing results in my patients with autoimmune diseases who are using an aggressive nutritional supplementation program. My only explanation for such unbelievable results in my patients is the fact that they are not dealing with an overactive immune system, but rather a confused immune system.

    The immune system is intended to be our reliable protector. It is always checking for self (one’s own body) while it is looking for non-self (any foreign substance or abnormal cell). When the immune system finds a virus, bacteria, or foreign body it destroys and eliminates it from the body. However, in autoimmune diseases the immune system actually attacks itself rather than a foreign substance. If it attacks the joint space, a person is diagnosed as having rheumatoid arthritis. If it attacks the bowels, it manifests as Crohn's disease or ulcerative colitis. When the connective tissue is attacked, a person might end up with scleroderma or lupus. If the myelin sheath around the nerve is the target, multiple sclerosis (MS) ensues.

    In the case of autoimmune diseases, I believe one’s immune system is not able to distinguish self from non-self. Being confused, the body is essentially destroying itself. Along with the traditional treatments, I recommend my patients with MS begin an aggressive nutritional supplement program. In doing so, I am not only building up their NATURAL antioxidant defense systems, but also I am building up their own NATURAL immune system. I find this helps my patients on both sides of the disease.

    I believe their immune system becomes less confused and begins to recognize “self” again. This means the immune system more readily identifies outside invaders--not attacking “self” as much. In addition, my patients’ antioxidant defense system is also built up to balance out the tremendous number of free radicals being produced. This brings the root cause of the damage--oxidative stress--back under control. Therefore, it is absolutely critical that I place my patients on the most potent antioxidant combination available.

    Am I promoting alternative medicine? Absolutely not. I never take my patients off of their medications until they’ve experienced significant improvement. Nutritional supplementation is always used in tandem with their present medical regimen and is strictly complimentary to traditional medicine. They not only tolerate their medications better, but I believe the nutritional supplements actually enhance the pharmaceutical effect of the drugs. In the case of Sjogren’s syndrome, medical treatment is not very effective, which leads me to encourage all patients with this disease to give the following nutritional supplementation a good 6 month trial to see if they improve.
  4. Hope4Sofia

    Hope4Sofia New Member


    ANNXYZ New Member

    Excellent article ! Thanks for sharing !!!!!
  6. usanagirl

    usanagirl New Member

  7. lurkernomore

    lurkernomore New Member

    And her dentist was actually the doctor who seemed to catch onto what was going on with her and refer her to a specialist, due to a rapid decline in her dental health. Despite the fact that she was an avid brusher and flosser, she was on the verge of losing all her teeth, due to the lack of saliva she was producing.

    I have watched her, in the past five years, struggling to hold onto her job as a radiologist, even changing hospitals where she works, in an effort to lighten her workload but I really don't know how she keeps going with her work.

    Three times now, she has been hospitalized for what began as a cold and quickly turned to pneumonia due to the lack of healthy fluids in her lungs being replaced with infectious fluid.

    This past weekend I saw her at another relative's wedding and she is still smiling and attempting to be cheerful. Then I quietly watched as she attempted to rise from her chair and I could have bawled. It took her four or five attempts to get up, steadying herself on the table and sides of the chair, wincing in pain as her husband seemed to look away, as if he were embarrassed by her struggles.

    This woman is in her thirties and is now reduced to the mobility of about an eighty year old woman. I really wonder why Sjogren's is not more widely covered and discussed because the impact it has on one's life is just unbelieveable and relentless. Is it just another orphan syndrome which will go unnoticed until an actual cure is found for it? So very sad indeed!
  8. JLH

    JLH New Member

    to hope4sofia: my regular optomitrist checks my eyes.

    My eyes stay dry and I also have a problem with my parotid glands swelling. These are the glands just under your jawbone and ears.

    When they swell, they will often make my teeth feel like I have a toothache, and put pressure on my ears and I feel like I have an ear ache -- but I have neither, it's just the pressure from the swelling in these glands.


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