Dehydrated? Learn the Latest About Sjogren's Syndrome Living With Sjogren's

Coping with Sjogren's requires adjustment. "I travel a lot as a speaker. Airplanes have little moisture, aggravating my symptoms. When I gave a speech in Arizona, the discomfort

in my eyes and throat was awful," Leong recalls. "You adapt. Now I know I can't visit desert places in warm weather, and I go nowhere without my eyedrops."

For many sufferers, support groups can be vital. "Sharing physical problems as well as emotional issues with people who've gone through it becomes very important," Stegemann finds. The foundation sponsors support groups in every US state and 21 other countries.

Promising New Therapies

Until recently, few therapies had been developed specifically for Sjogren's syndrome. But researchers are now on the verge of introducing four new treatments to help the millions of sufferers plagued by dry eyes and mouth:

• Eye drops that target immune deficiencies. Dry-eye products now on the market simply create artificial tears without addressing the cause of the problem. The first treatment to attempt to treat the immune abnormalities that cause dry eye is awaiting approval by the Food and Drug Administration (FDA). If approved, Restasis, developed by Allergan Pharmaceuticals, would be available only by prescription.
• Lozenge to increase saliva. Veldona, an oral medication, is the first product to improve salivary gland function instead of just relieving the symptoms. Amarillo Bioscience's large-scale clinical trial of Veldona (its working name) is in its third and final phase. It is a prescription-only lozenge that dissolves in the mouth. Dr. Philip Fox, DDS, the company's director of research and development, hopes to file for FDA approval later this year.
• Botox injections. Results are promising in a small study of Botox--a purified form of Botulinum toxin type A--at the Lowenstein Clinic for Sjogren's Syndrome, Mt. Sinai Medical Center. Dr. Harry Spiera, MD, a rheumatologist at Mt. Sinai, found that Botox increased his own patients' tear production markedly. "We just injected the first group of five Sjogren's patients, and are recruiting more. It will be very exciting if this works--it's the first time something has been shown to improve tears," Dr. Spiera says. Studies find Botox injections an effective therapy for eye spasms and other conditions helped by focal weakening of a selected muscle. Dr. Spiera hopes it will affect the muscle that prevents tear production. (Botox is currently approved to treat spastic- or contraction-related muscle diseases.)
• Long-lasting eye ointment. Dry Eye Ointment (DEO) is a calcium carbonate alternative to short-term eye drops or salves. Available in Europe, DEO, when applied to lower eyelid skin, provides artificial tears without blurring or irritation for up to 10 hours. In European clinical trials, 300 patients with medium to severely dry eye problems were treated effectively, according to an article published in the British Journal of Ophthalmology (July 1999). The drug's manufacturer has applied to the FDA to sell DEO in the USA.

   

"Finally, we're focusing on Sjogren's syndrome: That's the important thing," says Dr. Spiera, a leading expert on the condition. "For the first time, we're encouraged. Sjogren's is getting more of the attention it deserves."

For more information, see the SSF Web site at www.sjogrens.com or call 800-4-S-SJOGRENS.