Sjorjen's disease Anyone know how its diagnosed?

Discussion in 'Fibromyalgia Main Forum' started by rockymtnmom, Nov 7, 2006.

  1. rockymtnmom

    rockymtnmom New Member

    I know I spelled that wrong!!

    Just got back from the eye Dr. having been suffering from EXTREMELY dry eyes (always have dry mouth to the point that my tongue is perfectly dry). I have to get up 4 times or more in the night and put drops in . I am in terrible pain and have blurred/double vision.

    I have now worn "dry spots" on to my cornea.

    I asked about Sjorgren's and she said it could be.

    When I asked "how do I know"

    She replied "talk to your Dr." I thought since it involved the eyes so much she would know if there were a test to diagnose it.

    Does anyone have Sjorgrens, and if so, how did you know??

    Thanks to anyone who might know.

  2. joyfully

    joyfully New Member

    Re: "eye doctor", there are optomotrists and there are opthamologists. The latter has far more education than the optomotrist. I don't know which you went to.

    I cut and pasted this. It was my response to another person asking what drops to use. I'll give you this info first.

    If you tend to have autoimmune type diseases, then the doctor should have instructed you to use PRESERVATIVE FREE eye drops. They are more expensive and come in individual vials in a container.

    Do not touch the vial to your eye to avoid contamination. I put the remainder of the vial in the refrigerator to use later in the day. This slows the development of any bacteria in the left over solution.

    You will know that they are preservative free because you will see PF on the label.

    There are also eyegels. They are thicker and last longer between applications. These are great if your eyes are really dry; they last longer.

    Over the counter preservative free eye drops/gel---

    I USE PRESERVATIVE FREE "THERA TEARS LIQUID GEL". It is expensive, but what are your eyes worth? I get it at WalMart. This is a Gel and lasts alot longer than the eye drops. I keep the remainder of the vial in the refrigerator. I sit it upright in a small paper cup so the liquid doesn't seep out of the vial. Pull your bottom lid away from your eyeball and apply the drop or 2 on the inside of your bottom lid. Don't attempt to look straight up and try to get a drop to just fall on your eyeball. That is too hard to do. Don't touch the vial to your eyelid. Oh , I just though of something else, Thera Tears has a slight angle to the vial's end that really assists you in getting the drop(s) into your eyes.

    For eye drops, I use Alcon's "tears Naturale Free" lubricant eye drops (preservative free). I also get these at walmart.

    Oh, I just thought of something else. I think that there is a brand that says it is preservative free and comes in a regular eyedrop bottle. It isn't preservative free. The manufacturer claims that the preservative evaporates away quickly after application (or some other side-stepping explanation).

    Artificial tears can help. They come in different thicknesses, so you may have to experiment to find the right one. Some drops contain preservatives that might irritate your eyes. Drops without preservatives don't usually bother the eyes. Nonpreserved tears typically come in single-dose packages to prevent contamination with bacteria.

    At night, an eye ointment might provide more relief. Ointments are thicker than artificial tears and moisturize and protect the eye for several hours. They may blur your vision, which is why some people prefer to use them while they sleep.

    Hydroxypropyl methylcellulose (Lacriserts*) is a chemical that lubricates the surface of the eye and slows the evaporation of natural tears. It comes in a small pellet that you put in your lower eyelid. When you add artificial tears, the pellet dissolves and forms a film over your own tears that traps the moisture.

    Another alternative is surgery to close the tear ducts that drain tears from the eye. The surgery is called punctal occlusion. For a temporary closure, the doctor inserts collagen or silicone plugs into the ducts. Collagen plugs eventually dissolve, and silicone plugs are "permanent" until they are removed or fall out. For a longer lasting effect, the doctor can use a laser or cautery to seal the ducts.

    Sjogren's Syndrome Treatments, Causes and Symptoms - Information Book I copied some stuff on the healthnewsflash web site:

    Table of Contents
    What Are the Symptoms of Sjogren's Syndrome?
    Who Gets Sjogren's Syndrome?
    What Causes Sjogren's Syndrome?
    How Is Sjogren's Syndrome Diagnosed?
    What Type of Doctor Diagnoses and Treats Sjogren's Syndrome?
    Sjogren's Syndrome Treatments
    What Can I Do About Dry Eyes?
    What Can I Do About Dry Mouth?
    What Other Parts of the Body Are Involved in Sjogren's Syndrome?
    Does Sjogren's Syndrome Cause Lymphoma?
    Sjogren's Syndrome Research
    Keeping on Top of Your Condition
    Common Misspellings: Sjogrens syndrom, Sjorgens, Sjogens, Showgrens

    Sjogren's (SHOW-grins) syndrome is an autoimmune disease--that is, a disease in which the immune system turns against the body's own cells. In Sjogren's syndrome, the immune system targets moisture-producing glands and causes dryness in the mouth and eyes. Other parts of the body can be affected as well, resulting in a wide range of possible symptoms.

    Normally, the immune system works to protect us from disease by destroying harmful invading organisms like viruses and bacteria. In the case of Sjogren's syndrome, disease-fighting cells attack the glands that produce tears and saliva (the lacrimal and salivary glands). Damage to these glands keeps them from working properly and causes dry eyes and dry mouth. In technical terms, dry eyes are called keratoconjunctivitis sicca, or KCS, and dry mouth is called xerostomia. Your doctor may use these terms when talking to you about Sjogren's syndrome.

    The disease can affect other glands too, such as those in the stomach, pancreas, and intestines, and can cause dryness in other places that need moisture, such as the nose, throat, airways, and skin.

    You might hear Sjogren's syndrome called a rheumatic disease. A rheumatic disease causes inflammation in joints, muscles, skin, or other body tissue, and Sjogren's can do that. The many forms of arthritis, which often involve inflammation in the joints, among other problems, are examples of rheumatic diseases. Sjogren's is also considered a disorder of connective tissue, which is the framework of the body that supports organs and tissues (joints, muscles, and skin).

    Primary versus Secondary Sjogren's Syndrome

    Sjogren's syndrome is classified as either primary or secondary disease. Primary Sjogren's occurs by itself, and secondary Sjogren's occurs with another disease. Both are systemic disorders, although the symptoms in primary are more restricted.

    In primary Sjogren's syndrome, the doctor can trace the symptoms to problems with the tear and saliva glands. People with primary disease are more likely to have certain antibodies (substances that help fight a particular disease) circulating in their blood than people with secondary disease. These antibodies are called SS-A and SS-B. People with primary Sjogren's are more likely to have antinuclear antibodies (ANAs) in their blood. ANAs are autoantibodies, which are directed against the body.

    In secondary Sjogren's syndrome, the person had an autoimmune disease like rheumatoid arthritis or lupus before Sjogren's developed. People with this type tend to have more health problems because they have two diseases, and they are also less likely to have the antibodies associated with primary Sjogren's.

    What Are the Symptoms of Sjogren's Syndrome?
    The main symptoms are

    Dry eyes--Your eyes may be red and burn and itch. People say it feels like they have sand in their eyes. Also, your vision may be blurry, and bright light, especially fluorescent lighting, might bother you.

    Dry mouth--Dry mouth feels like a mouth full of cotton. It's difficult to swallow, speak, and taste. Your sense of smell can change, and you may develop a dry cough. Also, because you lack the protective effects of saliva, dry mouth increases your chances of developing cavities and mouth infections.

    Both primary and secondary Sjogren's syndrome can affect other parts of the body as well, including the skin, joints, lungs, kidneys, blood vessels, and nervous system, and cause symptoms such as

    Dry skin

    Skin rashes

    Thyroid problems

    Joint and muscle pain


    Vaginal dryness

    Numbness and tingling in the extremities

    When Sjogren's affects other parts of the body, the condition is called extraglandular involvement because the problems extend beyond the tear and salivary glands. These problems are described in more detail later.

    Finally, Sjogren's can cause extreme fatigue that can seriously interfere with daily life.

    What Causes Dryness in Sjogren's Syndrome?

    In the autoimmune attack that causes Sjogren's, disease-fighting cells called lymphocytes target the glands that produce moisture--primarily the lacrimal (tear) and salivary (saliva) glands. Although no one knows exactly how damage occurs, damaged glands can no longer produce tears and saliva, and eye and mouth dryness result. When the skin, sinuses, airways, and vaginal tissues are affected, dryness occurs in those places, too.

    Who Gets Sjogren's Syndrome?
    Experts believe 1 to 4 million people have the disease. Most--90 percent---are women. It can occur at any age, but it usually is diagnosed after age 40 and can affect people of all races and ethnic backgrounds. It's rare in children, but it can occur.

    What Causes Sjogren's Syndrome?
    Researchers think Sjogren's syndrome is caused by a combination of genetic and environmental factors. Several different genes appear to be involved, but scientists are not certain exactly which ones are linked to the disease since different genes seem to play a role in different people. For example, there is one gene that predisposes Caucasians to the disease. Other genes are linked to Sjogren's in people of Japanese, Chinese, and African American descent. Simply having one of these genes will not cause a person to develop the disease, however. Some sort of trigger must activate the immune system.

    Scientists think that the trigger may be a viral or bacterial infection. It might work like this: A person who has a Sjogren's-associated gene gets a viral infection. The virus stimulates the immune system to act, but the gene alters the attack, sending fighter cells (lymphocytes) to the eye and mouth glands. Once there, the lymphocytes attack healthy cells, causing the inflammation that damages the glands and keeps them from working properly. These fighter cells are supposed to die after their attack in a natural process called apoptosis, but in people with Sjogren's syndrome, they continue to attack, causing further damage. Scientists think that resistance to apoptosis may be genetic.

    The possibility that the endocrine and nervous systems play a role is also under investigation.

    How Is Sjogren's Syndrome Diagnosed?
    The doctor will first take a detailed medical history, which includes asking questions about general health, symptoms, family medical history, alcohol consumption, smoking, or use of drugs or medications. The doctor will also do a complete physical exam to check for other signs of Sjogren's.

    You may have some tests, too. First, the doctor will want to check your eyes and mouth to see whether Sjogren's is causing your symptoms and how severe the problem is. Then, the doctor may do other tests to see whether the disease is elsewhere in the body as well.

    Common eye and mouth tests are

    Schirmer test--This test measures tears to see how the lacrimal gland is working. It can be done in two ways: In Schirmer I, the doctor puts thin paper strips under the lower eyelids and measures the amount of wetness on the paper after 5 minutes. People with Sjogren's usually produce less than 8 millimeters of tears. The Schirmer II test is similar, but the doctor uses a cotton swab to stimulate a tear reflex inside the nose.

    Staining with vital dyes (rose bengal or lissamine green)--The tests show how much damage dryness has done to the surface of the eye. The doctor puts a drop of a liquid containing a dye into the lower eye lid. These drops stain on the surface of the eye, highlighting any areas of injury.

    Slit lamp examination--This test shows how severe the dryness is and whether the outside of the eye is inflamed. An ophthalmologist (eye specialist) uses equipment that magnifies to carefully examine the eye.

    Mouth exam--The doctor will look in the mouth for signs of dryness and to see whether any of the major salivary glands are swollen. Signs of dryness include a dry, sticky mouth; cavities; thick saliva, or none at all; a smooth look to the tongue; redness in the mouth; dry, cracked lips; and sores at the corners of the mouth. The doctor might also try to get a sample of saliva to see how much the glands are producing and to check its quality.

    Salivary gland biopsy of the lip--This test is the best way to find out whether dry mouth is caused by Sjogren's syndrome. The doctor removes tiny minor salivary glands from the inside of the lower lip and examines them under the microscope. If the glands contain lymphocytes in a particular pattern, the test is positive for Sjogren's syndrome.

    Because there are many causes of dry eyes and dry mouth, the doctor will take other possible causes into account. Generally, you are considered to have definite Sjogren's if you have dry eyes, dry mouth, and a positive lip biopsy. But the doctor may decide to do additional tests to see whether other parts of the body are affected. These tests may include

    Routine blood tests--The doctor will take blood samples to check blood count and blood sugar level, and to see how the liver and kidneys are working.

    Immunological tests--These blood tests check for antibodies commonly found in the blood of people with Sjogren's syndrome. For example:

    Antithyroid antibodies are created when antibodies migrate out of the salivary glands into the thyroid gland. Antithyroid antibodies cause thyroiditis (inflammation of the thyroid), a common problem in people with Sjogren's.

    Immunoglobulins and gamma globulins are antibodies that everyone has in their blood, but people with Sjogren's usually have too many of them.

    Rheumatoid factors (RFs) are found in the blood of people with rheumatoid arthritis, as well as in people with Sjogren's. Substances known as cryoglobulins may be detected; these indicate risk of lymphoma.

    Similarly, the presence of antinuclear antibodies (ANAs) can indicate an autoimmune disorder, including Sjogren's.

    Sjogren's antibodies, called SS-A (or SS-Ro) and SS-B (or SS-La), are specific antinuclear antibodies common in people with Sjogren's. However, you can have Sjogren's without having these ANAs.

    [This Message was Edited on 11/07/2006]
  3. rockymtnmom

    rockymtnmom New Member

    Wow what a comprehensive answer.

    I went to an optomistrist, not an opthamologist, probably explains the lack of knowledge.

    I got preservative free tears, the Thera Tears brand, but I'm going to go out and get the gel you suggested when I pick up my Rx for Restasis.

    They did a strip test (score 10) but said that the result was invalid since they were unable to anesthetise the eye due to my vaso-vagal response to those drugs, and that my eyes teared from the irritation of the strip.

    I have dry spots on both corneas, the right has more and larger spots causing double vision.

    I have had ANA tests before that have been negative.

    I think I had better go on to another Dr. who has more ability to dx this condition.

    I can still produce tears when I cry or have IBS, so perhaps there is something else going on.

  4. JeanneH1

    JeanneH1 New Member

    Hi Kim, I have Sjogrens. I have severe dry eye for which I use a steroid prescription eye drop. Plus otc refresh plus eye drops. Your primary DR. can do a blood test, that's how they dx'd mine. Good Luck. I know how annoying and painful it can be. Do you have any light sensitivity?
  5. rockymtnmom

    rockymtnmom New Member

    I have SUCH light sensitivity - I feel like a vampire! Every morning I wake up and throw my hands over my eyes from the pain (not light yet!)
    I saw an opthamologist and I scored less than 3 mm on the tear strip test. I also had the dyes in my eyes and had multiple lesions. The lesions continue to get worse. He swears they won't permanently damage my cornea, but how can they not over time??
    I have seen him 3 times and had both of the tear ducts plugged on both eyes with no improvement. He said there is nothing more he can really do for me, and that I probably won't be able to wear contacts again, not am I eligible for LASIK surgery because of the dry eye thing. I have really bad vision, so this is a bummer.

    I am taking restasis, using theratears and the nighttime ointment, but I think I need to get the gel instead.He siad restasis may take 3 mos to work if it does at all...

    A steroid sounds like a good idea at this point. I see my regular doctor tomorrow, hopefully he will know what to do next (you'd think it'd be a referral to an opthamologist, but that is clearly not the answer!).

    BLood tests are next, I guess! I think of FMS/CFIDS as autoimmune diseases but not everyone else does.

    Thanks for your input! (I am wearing sunglasses inside all day at this point!)


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