Interstitial Cystitis Advice

ICers often have overlapping medical conditions, we may be taking medications, or have allergies. All three of these things, as well as other factors can contribute to dry eyes. From time to time almost everyone may feel that there eyes are a bit dry, but if you have a (chronic) medical condition like Sjogren's Syndrome your eyes may suffer from dryness and pain nearly all the time. Sjogren’s is often linked to rheumatic conditions such as rheumatoid arthritis, as well a number of Interstitial Cystitis patients suffer from this disorder. Other conditions that are often seen with Sjogren’s Syndrome are Systemic Sclerosis, Systemic Lupus and Polymyositis/Dermatomyositis.

The telltale signs of Sjogren’s Syndrome are persistently dry eyes and mouth. At least 1-4 million North Americans are thought to have this condition, making it one of the most common autoimmune disorders that are seen today. Other symptoms include dry skin, nose and dryness of vaginal area. As with so many conditions that seem to affect ICers (including IC itself) Sjogren’s Syndrome is nine times more likely to appear in women, and the onset can begin at any age.

An autoimmune disorder, Sjogren’s Syndrome is a persistent condition that occurs when white blood cells in the body begin to attack (and even destroy) some of the glands in our bodies that are responsible for creating moisture. When Sjogren’s attacks a person it causes inflammation in the glands of the body, primarily the salivary and lacrimal glands. These glands are responsible for delivering normal levels of moisture to such organs as the nose, eyes, throat, mouth, respiratory airways and even the certain ones in the vagina called he Bartholin glands.

As well there are two forms of Sjogren’s Syndrome, though it is worth noting that Sjogren’s affects the whole body to some extent regardless of what form you are diagnosed with initially as this condition is systemic. Primary Sjogren’s Syndrome occurs most frequently and is usually marked by dryness of the eyes (they may feel gritty and sore, and can look red or irritated), a dry mouth and throat (problems such as hard time swallowing, a horse voice and even a dry cough are sometimes seen), an increase in dental cavities (as saliva, who’s production is decreased with Sjogren’s, is largely responsible for helping to fend off bacteria in the mouth and therefore prevent cavities and infections) and ongoing fatigue and lethargy. Changes in taste and smell, digestive problems as well as a dry or cracked tongue are not unknown either.

Secondary Sjogren's Syndrome is rarer, in this instance not only are the above areas of the body mentioned but other vital organs and body parts such as the stomach, muscles and joints, nerves, kidneys, liver, thyroid gland, pancreas, brain and lungs can be affected too. Secondary Sjogren's Syndrome is more common in people with conditions like systemic lupus erythematosus however. For those who do develop secondary Sjogren’s the symptoms may include dry eyes, mouth and so forth, fatigue, weakness, memory problems, confusion, muscle weakness and sensations of numbness or tingling) which can occur through out the body.

The sooner that Sjogren’s is spotted and diagnosed the better. If left untreated over time Sjogren's Syndrome can potentially cause damage to vital organs. While death resulting directly from Sjogren’s is exceedingly uncommon, it has been reported, though this is generally in conjunction with other conditions that are present in the patient. As with many conditions that Interstitial Cystitis patients appear to develop, Sjogren’s is often misdiagnosed or not diagnosed at all. As well it can mimic other autoimmune and rheumatoid conditions such as Multiple Sclerosis (MS), Chronic Fatigue Syndrome (CFS), Fibromyalgia (FMS), rheumatoid arthritis and lupus. The affects of Sjogren's Syndrome seem to vary substantially from patient to patient, and not all symptoms may appear at the same time or to the same patient. As a patient may go to different doctors (and/or even a dentist where tooth and mouth symptoms are present) the signs and symptoms of Sjogren's may be missed as they are being treated separately instead of as a whole condition. The average time between the onset of Sjogren's Syndrome and a formal diagnosis of it is over six years for many patients. If you are suspected of having Sjogren’s it is a good idea for your GP (family doctor) to send you to a Rheumatologist. Ophthalmologists and dentists are good experts to consult as well. All three of these specialists as well as your GP can help you try to treat your Sjogren’s.

Sjogren’s Syndrome is usually diagnosed through blood work (several tests will be carried out on your blood to look for certain indicating factors) and other tests such as one called a Schirmer Test which measures a person’s tear production levels (dental tests may be done as well) maybe carried out. Early detection and proper care (including eye and dental care) is critically important when managing Sjogren’s.

Over the counter products that can offer some relief for many patients include preservative-free artificial tears, artificial salivas, vaginal lubricants, saline nasal sprays and unscented skin lotions. Some people find that using a humidifier can help them as well. A prescription medication called Lacrisert can help relieve dry eyes too, and a couple of prescription products are available to specifically help combat the affects of dry mouth. When stronger drugs are required the first line of defense is NSAIDs, after that drugs like immunosuppressive medications and even steroids may be called into play. At this time there is no definitive cure for Sjogren’s syndrome, and may patients require a combination of different products to try and help relieve their symptoms.

The earlier you can be diagnosed the better. If you feel that the description you just read may be talking about you, or if you have a history of these symptoms please contact your doctor immediately so that be properly tested, and hopefully determine if in fact you do have Sjogren’s Syndrome.



For more information on Sjogren’s Syndrome please follow these links or contact their respective organizations.

Sjogren's Syndrome Foundation
8120 Woodmont Ave.
Suite 530
Bethesda, MD 20814-1437
tms@sjogrens.org
http://www.sjogrens.org
Tel: 301-718-0300 800-4-SJOGREN (475-6473)
Fax: 301-718-0322

National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
31 Center Dr., Rm. 4C02 MSC 2350
Bethesda, MD 20892-2350
NIAMSinfo@mail.nih.gov
http://www.niams.nih.gov
Tel: 301-496-8190 877-22-NIAMS (226-4267)

National Organization for Rare Disorders (NORD)
P.O. Box 1968
(55 Kenosia Avenue)
Danbury, CT 06813-1968
orphan@rarediseases.org
http://www.rarediseases.org
Tel: 203-744-0100 Voice Mail 800-999-NORD (6673)
Fax: 203-798-2291

National Eye Institute (NEI)
National Institutes of Health, DHHS
31 Center Drive, Rm. 6A32 MSC 2510
Bethesda, MD 20892-2510
2020@nei.nih.gov
http://www.nei.nih.gov
Tel: 301-496-5248 Bulk Publications Orders: 800-869-2020

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

Arthritis Foundation
1330 West Peachtree Street
Suite 100
Atlanta, GA 30309
help@arthritis.org
http://www.arthritis.org
Tel: 800-568-4045 404-872-7100 404-965-7888
Fax: 404-872-0457

Web based literature that includes links to other related sites:

http://www.nlm.nih.gov/medlineplus/sjogrenssyndrome.html