What the Heck is Sjogren’s Syndrome?

So, today I got a new title.  Another diagnosis.  And this is one I don’t remember learning about in nursing school.  I’ve honestly never heard of it before – Sjogren’s Syndrome.  I’m not even sure how to pronounce it!

According to the Mayo Clinic,

Sjogren’s (SHOW-grins) syndrome is a disorder of your immune system often defined by its two most common symptoms — dry eyes and a dry mouth.

Sjogren’s syndrome often accompanies other autoimmune disorders, such as rheumatoid arthritis and lupus. In Sjogren’s syndrome, the mucous membranes and moisture-secreting glands of your eyes and mouth are usually affected first — resulting in decreased production of tears and saliva.

Once I started reading about the disorder, I felt almost a sense of relief.  I have been dealing with these symptoms for so long – I just thought it was normal!  I’m so relieved to know that there is help out there!

My Rheumatologist had asked me a few times if I had problems with dry eyes, and I had actually said no.  My eyes water constantly to the point that I have trouble even wearing makeup because it ends up all over my face.  Definitely not dry eyes?  I assumed I had allergies.  Well, she sent me to see an eye doctor anyway.

What a fun appointment that was!  For nearly three hours he poked and prodded on my eyes.  At one point he stuck some kind of litmus paper on my eyeballs and I had to sit there for what seemed like the longest sixty seconds of my life.  Apparently I was supposed to score about a thirty, but I only scored a five.  I guess that wasn’t good.  Then he did a similar test, but with a string instead of paper.  I felt like I had dental floss sticking out of my eyeballs!

Next, he applied green eye drops to my eyes so he could examine the surface to look for abrasions.  Then, because of the Plaquenil that I take, he did a vision field test.  This consisted of me sticking my head into this box and pushing a button every time I saw a little flash of light somewhere in my periphery.  It seemed to take forever, and I think I did bad on the test just because my attention span was shot and I was exhausted.

Well, long story short, apparently I do have dry eyes.  And I have it bad!  The doc explained that my eyes are watering saline because the tear ducts aren’t producing the oilier lubrication that they are supposed to produce.  Its like rebound tearing that is actually making the dry eyes worse.  The same thing is happening in my mouth, I suppose, which is why I keep getting all the sores.

Treatment?  More prescriptions!!  He prescribed me Restasis (with insurance – $60/month!) – an eyedrop that I have to use twice a day.  They burn a bit when I put them in, but over time this is supposed to increase the production of lubrication.  He also gave me some other eyedrops that look kind of like Vaseline, but they feel so good to my burning scratchy eyes!  It’s funny how you don’t realize something is bothering you until it stops.  Then you are like, “Wow!”

If that doesn’t work, I can undergo a “minor procedure” where they stick a little plug in the tear duct to prevent the reabsorption of my tears.  Sounds awful!  I’ll stick to the drops!

I guess I should have seen this problem a long time ago.  Well, I did, really, I just didn’t know there was a name for it – much less a cure (well, not a cure, really).  I have had the sores in my mouth for years!  Certain foods definitely make it worse – acidic food, tomatoes, Red Bull.  The eye thing, I should have known wasn’t normal.  As I said, eye makeup and I don’t get along!  Even eye creams make my eyes cry like a baby.  I can’t stand sitting near a fan or an air conditioner.  And when I wake up in the morning I feel like my eyelids are sandpaper.  I really just ignored all this because it wasn’t really that bothersome.

While I was at the drug store, I also came across some special toothpaste, mouthwash, and gum just for this problem.  I’m really excited to see if things improve.  I feel like I might have actually found a “quick fix” for some of my issues.

Maybe….but there was this little part I read about cancer.  Cancer?

Lymph nodes. A small percentage of people with Sjogren’s syndrome develop cancer of the lymph nodes (lymphoma).

End of paragraph?  Can you elaborate a little?  What’s a small percentage?  Well, I found the most common statistic to be about 5% of people with Sjogren’s eventually develop lymphoma.  That’s something lovely to think about.

Here is a great article I found about Sjogren’s Syndrome:  http://www.medic8.com/skin-disorders/sjogrens-syndrome.htm

I also found these recommendations, I’ll let you know if I try them:

  • Tear substitutes are efficient in mild to moderate cases of dry eye.

  • Moisture-chamber eyeglasses will help preserve tear volume by minimizing airflow over the surface of the eye.
  • Avoiding dust, fumes, and excessive makeup, especially around the margin of the eyelid.
  • Brush frequently, both before and after meals, using an electric toothbrush. Floss and irrigate the teeth (using a Waterpik ® or other tool) frequently. Among Sjögren’s patients, oral hygiene is crucial in combating tooth decay. See a dentist regularly to monitor tooth decay and loss of enamel.
  • Use a pH-balanced mouthwash to lower acidity. Try 1/4 teaspoon of baking soda dissolved in 1/4 cup of warm water. Alcohol-free goldenseal (H. canadensis) can be used as an antibacterial mouthwash. Dissolve 30 drops in 2 oz water and swish the solution about in the mouth.
  • Avoid sugary foods. Bacteria produce acid for 20 minutes whenever sugar is ingested. Avoid acidic foods, including citrus fruits.
  • Drink non-acidic bottled water.
  • Use a straw to protect the mouth when drinking soft drinks and other acidic beverages.
  • Avoid abrasive toothpastes that can harm already compromised tooth enamel. Certain toothpastes (e.g., Biotene) have been specially formulated for individuals with dry mouth.
  • Drink plenty of water to replace the lost moisture in the oral cavity. (Remember to avoid acidic beverages like tomato and orange juice.)
  • A sugarless candy or sugar-free chewing gum kept in the mouth can stimulate saliva flow. Xylitol, a sugar substitute used in candy and gum, is thought by some to inhibit dental caries. Never sleep with anything in the mouth. Many health food stores carry rice- or barley-sweetened candies.
  • Avoid caffeine, which is diuretic.
  • Use a humidifier to keep the air moist.
  • Breathe through the nose rather than the mouth
  • A mixture of saline and aloe can relieve dry nasal membranes and nosebleeds and is gentle enough for repeated use.
  • Avoid antibacterial and abrasive soaps; use soaps with added oils or moisturizers and moisturize the skin after bathing.

Supplement recommendations found on the internet (I have not tried these):

  • EPA and DHA: 700 mg EPA and 500 mg DHA twice daily with food.
  • GLA: 285 mg one or two times daily with food.
  • Life Flora: An intestinal bacteria to assist with digestion
  • Thymic Immune Factors. Follow directions on label.
  • L-glutamine: 500 mg daily.
  • DHEA: Blood testing is recommended before DHEA therapy begins to establish a baseline; then a starting dose of 15 mg to 75 mg may be recommended. Retesting is recommended three to six weeks afterward to ensure youthful levels.
  • Goldenseal (H. canadensis): Follow directions on label.
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