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Sjogren's Syndrome

The TVClubHouse: General Discussion ARCHIVES: 2006 Mar. ~ 2006 May: Sjogren's Syndrome users admin

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Herckleperckle
Member

11-20-2003

Monday, May 08, 2006 - 7:03 pm   Edit Post Move Post Delete Post View Post Send Herckleperckle a private message Print Post    
Source: Ivanhoe.com
Reported March 25, 2002

Sjogren’s Syndrome: A Life Without Tears


(Ivanhoe Newswire) -- Kathy Hettlinger hasn't shed a tear in 13 years -- not when she's sad, not when she's peeling onions. Her eyes are so dry that it takes more than 100 daily applications of prescription tear-replacement drops to moisten them. Once a professional nightclub singer, Hettlinger risks choking to death each time she takes a breath to speak or ties to swallow. To lubricate her mouth because her body can't form saliva, she constantly sips beverages and sucks candy.

"My greatest challenge is trying to live a normal life," says Hettlinger, 45.

Though she'd complained of joint pain and a dry mouth and eyes since childhood, her parents dismissed her symptoms as "all in my head." It wasn't until she made a passing reference to "peas in my mouth," tiny bumps she could feel with her tongue which she assumed everyone had that her mother encouraged her see a physician. She was 24.

The bumps turned out to be backed up salivary glands, symptomatic of Sjogren's syndrome, a debilitating autoimmune disease in which the body attacks its own moisture-producing glands. It also can cause joint pain, dryness of the skin, nose and vagina, leading to sexual dysfunction, and extraordinary fatigue. Of the 2 million to 4 million Americans who have the disease, 9 out of 10 are women whose symptoms appear around menopause. About 95 percent have Secondary Sjogren's syndrome, which shows up as a postscript to a connective tissue disease like arthritis, lupus or scleroderma. A minority have Primary Sjogren's, so named because the disease is a stand-alone.

Hettlinger's physician is rheumatologist Matthew D. Heller M.D., medical director, president and CEO of the North Shore Center for Arthritis Treatment and Clinic Research in Peabody, Mass. A nationally recognized expert on Sjogren's, Heller says: "The greatest challenge for these people is to get a physician to take their symptoms seriously. Because not many doctors are acquainted with Sjogren's, getting a correct diagnosis and efficacious treatment is difficult. Many patients are simply dismissed as having hysterical symptoms, when what they're experiencing is all too real."

Little wonder then that the most common reaction to a Sjogren's diagnosis is depression, frustration and anger, part of the process of grieving for lost health.

Because symptoms can affect many organ systems such as the lungs, kidneys, liver, nerves, thyroid, joints and skin, diagnosis is tricky. For a patient to fit the profile of Sjogren's, she must have four out of six conditions -- dry eyes, dry mouth, a biopsy of the lower lip showing cells in a certain configuration, a systemic autoimmune disease, plus specific blood antibodies.

"The fatigue associated with Sjogren's is horrible," says Hettlinger. "Because you're always exhausted and can't hold a job, even 20 year-olds are on disability. Factor in frequent infections resulting from an underactive immune system, and a nonexistent sex drive due to painful intercourse, and you begin to understand living with Sjogren's."

The best doctors can do is ease symptom with pilcarpine and Salagen to help keep tissues moist, and Plaquenil to lessen fatigue. Patients often develop urinary tract infections and thrush, requiring even more medication.

Nonetheless, Dr. Heller remains optimistic -- even though researchers haven't pinned down Sjogren's cause other than to suspect a triggering viral infection like Hepatitis C, Epstein-Barr Syndrome or herpes and a hereditary predisposition.

Researchers have not, however, given up on finding treatments for Sjogren's. In addition to efforts toward using gene therapy to transfer salivary cells, researchers at the National Institute of Dental and Craniofacial Research are attempting to develop an artificial salivary gland to insert into the cells lining the inside of the cheek.

"We've seen so many breakthroughs in treating rheumatoid disease, so I'm sure these will soon extend to Sjogren's," says Heller. "For now, the message for people who think they might have the disease is to be proactive. Become suspicious if you constantly have dry eyes and mouth, or suddenly develop cavities for no apparent reason. This could indicate that you don't have enough saliva or antibodies to prevent tooth decay, symptomatic of Sjogren's. Find a specialist who understands the disease and who can help you live more comfortably."

If you would like more information, please contact:

National Organization for Rare Disorders (NORD)
P.O. Box 8923
(100 Route 37)
New Fairfield, CT 06812-8923
orphan@rarediseases.org
http://www.rarediseases.org
(800) 999-6673

National Eye Institute (NEI)
National Institutes of Health
Bldg. 31, Rm. 6A32
Bethesda, MD 20892-2510
2020@b31.nei.nih.gov
http://www.nei.nih.gov
(301) 496-5248

National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
National Institutes of Health
Bldg. 31, Rm. 4C05
Bethesda, MD 20892-2350
NIAMSInfo@mail.nih.gov
http://www.nih.gov/niams
(301) 496-8188

National Institute of Dental and Craniofacial Research (NIDCR)
National Institutes of Health
Bldg. 45, Rm. 4AS19
Bethesda, MD 20892-6400
nidrinfo@od31.nidr.nih.gov
http://www.nidr.nih.gov
(301) 496-4261

Sjogren's Syndrome Foundation
8120 Woodmont Ave, Suite 530
Bethesda, MD 20814-1437
ssf@sjogrens.org
http://www.sjogrens.org
(301) 718-0300

Award-winning journalist Sheila Sobell (http://www.writersobell.com) is the author of three health books.

Herckleperckle
Member

11-20-2003

Monday, May 08, 2006 - 7:13 pm   Edit Post Move Post Delete Post View Post Send Herckleperckle a private message Print Post    
Source: Ivanhoe.com
Reported October 29, 2003

Say Good-Bye to Dry Eye


(Ivanhoe Newswire) -- A drug commonly used to prevent rejection of kidney, liver and heart transplants could also help the millions of Americans who suffer from dry eye, according to new research.

Cyclosporine is a commonly used immunosuppressive drug, meaning it stops the body from producing certain antibodies. These types of drugs are frequently used to prevent the body from rejecting organ transplants. Researchers say a topical form of the drug has significantly improved tear production in patients with dry eye associated with Sjogren’s syndrome and other autoimmune diseases. In Sjogren’s syndrome, white blood cells attack the body’s moisture-producing glands. It affects between 1 million and 4 million Americans, and it can cause dry eyes, dry mouth, or fatigue.

During the trials, researchers tested the efficacy and safety of topical cyclosporine in patients with moderate to severe dry eye. Some of the patients suffered from an autoimmune disease, such as Sjogren’s syndrome, and some did not. Researchers used two different strengths of cyclosporine and found even when the smallest dose was administered, the drug was shown to significantly improve tear production in most of the patients, whether they suffered from an autoimmune disease or not.

Dry eye is a persistent dryness of the cornea and the conjunctiva -- the thin, transparent tissue that covers the outer surface of the eye. Decreased function of the tear glands or increased evaporation of tears causes the condition. Nearly 10 million Americans suffer from dry eye, and it can be a symptom of Sjogren’s syndrome, Parkinson’s disease, certain medications, or even a Vitamin A deficiency. For many sufferers, over-the-counter eye drops do not work sufficiently. Researchers say cyclosporine will dramatically change the way dry eye disease is treated.

“Unlike artificial tears, topical cyclosporine treats the underlying cause of dry eye and leads to increased tear production in the majority of patients in our clinical studies,” says Scott Whitcup, M.D., senior author of the study from Allergan.

SOURCE: American College of Rheumatology Annual Scientific Meeting in Orlando, Fla., Oct. 23-28, 2003

Buttercup
Member

09-10-2000

Tuesday, May 09, 2006 - 6:32 pm   Edit Post Move Post Delete Post View Post Send Buttercup a private message Print Post    
Thank you, HP