Sjogren’s Syndrome, in Brief


Since my late teens I’ve been plagued by autoimmune disease complications but remained undiagnosed until I was 40 yrs old.

My most recent diagnosis is secondary Sjogren’s Syndrome.  This means the disorder manifested as a result of my other autoimmune issues.  Frequently these illnesses manifest as a cluster of three rather than a single disorder or syndrome.   Below I’ve included information from the Mayo Clinic:

Definition

By Mayo Clinic staff

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…

The main symptoms of Sjogren’s syndrome are:

  • Dry eyes. Your eyes may burn, itch or feel gritty — as if there’s sand in them.
  • Dry mouth. Your mouth may feel like it’s full of cotton, making it difficult

    ...how dry I am....

    to swallow or speak.

Sjogren’s syndrome patients may also experience one or more of the following:

  • Joint pain, swelling and stiffness
  • Swollen salivary glands — particularly the set located behind your jaw and in front of your ears
  • Skin rashes or dry skin
  • Vaginal dryness
  • Persistent dry cough
  • Prolonged fatigue

Sjogren’s patients have a greater risk of lymphoma, serious eye complications related to dryness/eye ulcers, lung infections & Loss of lung expandability  primary biliary cirrhosis,  and a host of other “goodies”.

To share an example of the difference it makes in a daily routine, consider this:

Every day I have to swab moisturizing products in my nose & ears at regular intervals.  I also carry oral moisture products to use 12-16 times a day.  Even with diligent oral care and follow-up I’ve lost MULTIPLE teeth due to Sjogren’s. On average, I have to sneak away to use moisturizing eye drops every couple hours.  I feel like a pack horse with all of this stuff in my bag or scrub pockets (when I work).

I also avoid fans like the plague because of the dryness.  It drys my eyes & mouth immediately, so much that I can’t speak or blink.  For the same reason, I avoid wind and always wear sunglasses due to light sensitivity.  I’m saving up to get a special pair of glasses with a “seal” to lock out breezes and I can’t wait!!  They actually look nice, which is a pleasant change from other options.

Overall, the treatment is the same as for other autoimmune diseases–immuno-suppression & symptom management.  Currently, I’m on Methotrexate which has been a God-send.  I’ll put up a side-effects post in the near future.

For anyone looking for support, check out my fave Sjogren’s group on yahoo.  I can’t take any credit for starting or moderating the group but I’m SO grateful to whoever did!!  These folks have been a ton of support.  I also have links to other stuff on my ‘this ‘n that & resource pages.

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2 Comments (+add yours?)

  1. Wendy Burnett
    Feb 15, 2011 @ 01:31:41

    When I was on methotrexate, the main side effect I had (other than the nausea when I took it) was mouth sores. I discovered that putting salt on the sore would clear it up almost immediately (warning: this is a VERY painful option, but I’m a “yank the bandage off” kind of girl. I’d rather deal with really bad pain for a few minutes than have a sore for days that hurts only a little less.)

    Reply

    • Autoimmune Maven
      Feb 15, 2011 @ 13:19:23

      I had a huge problem at first, but my rheumy doubled my folic acid to 2 mg a day and it’s much better. I still can’t eat “rough” stuff like nachos but I don’t have big, fat sores anymore. The nausea is manageable but I’m shedding LOTS of hair, including my eyelashes & brows. I’m considering ordering some Joan Rivers ‘Great Hair Day’ to see if it helps disguise it. I really feel tons better though and can’t see discontinuing for vanity’s sake. Thanks for reading chicky!

      Reply

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