Sjogren’s Awareness: Oh how I wish I was oblivious!

April is Sjogren’s Syndrome awareness month. As a fellow sufferer said yesterday – it is no April Fool’s joke. In an effort to help educate others about Sjogren’s I will blog some of my journey with this illness throughout the month.

Today on my personal Facebook page, I was asked by a friend how long ago I was diagnosed, and if Sjogren’s was “progressive”.

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I was “officially” diagnosed with Sjogren’s in 2002 (based on positive blood work for 3 different antibodies as well as obvious physical symptoms), however I know that I had it long before then. Significant symptoms began about 12 yrs prior, and lesser symptoms even earlier (as a child/ teen).

After the Sjogren’s diagnosis the docs thought I had Lupus as well, as I met several of the diagnostic criteria for Lupus especially due to sun-related symptoms, including at times the tell-tale malar (butterfly shape rash) on face. Then later, they decided I didn’t have it because I had not developed any signs of “organ involvement” (lungs, kidney, brain most typical organ manifestations with Lupus).

Next they thought I also had Dermatomyositis (another AI disease with specific types of skin and muscle manifestations) due to a very particular type of rash I developed on my hands, Gottron’s Sign, specific to that autoimmune disease. This was diagnosed by a Dermatologist who specializes in skin manifestations of AI diseases.

Eventually they decided I had Undifferentiated Connective Tissue Disease which basically means I have symptoms of both Lupus and Dermatomyositis but not, as they say, “full-blown” disease. Also related to the above I have Raynaud’s Syndrome, and previous episodes of Vasculitis.

Then the most significant event in my medical journey thus far was in May 2009. I was diagnosed with Autoimmune Hepatitis; my immune system attacked and damaged my liver. Hepatitis just means liver inflammation, my illness is not contagious, nor contractible like other “hepatitis”. Quite simply, my body began attacking my liver for no good reason at all.

Immediately after liver biopsy the gold standard to confirm the diagnosis, I began aggressive treatment including initial high dose, then long term steroids – Prednisone, followed by a chemotherapy immune-suppressant drug which I have to be on for the rest of my life, which hopefully as long as I take it and it continues to work, will keep me in a sort of remission.

Additional liver biopsies have confirmed my liver health is not as compromised as it was in 2009. BUT the immune-suppressant drug I take to keep my liver happy has significant side effects including small daily ones like digestive system upset (vomiting / diarrhea/ nausea) ranging to increased risk of cancer especially of lymphomas, and skin cancers. Apparently approximately less than 5% of Sjogren’s patients get AI Hepatitis. I often wonder why I could not be in the small percentage of people who win the lottery instead.

There are some people who only get what are described as the hallmark symptoms of Sjogren’s – dry eye and dry mouth. Too many of us get multiple, systemic symptoms. In speaking to many other Sjogren’s patients it also seems that once you are diagnosed with one AI connective tissue disease you begin to collect others, a domino effect. Over the previous few years I have suspected that I have thyroid and neurological issues developing or undiagnosed which remain under investigation.

Is Sjogren’s progressive? No, not in the sense of diseases such as ALS, which continually ravage the body destroying function to a greater and greater extent leading to inevitable death from that disease specifically. Sjogren’s is however, potentially life-threatening when patients experience organ involvement such as AI Hepatitis or other serious complications. Sjogren’s patients are at 44x greater risk for certain lymphomas. The drug I need to be on for my liver also has increased risk of lymphoma as a side effect. Does this mean I will get lymphoma? No, but I do feel like am rolling the dice. Based on my lotto winnings, I am not often a lucky gambler. Fingers crossed, hoping for better luck this time!

For more info on Sjogren’s: http://www.sjogrens.org

8 thoughts on “Sjogren’s Awareness: Oh how I wish I was oblivious!

  1. Really good Sus! So thankful for your friendship, even though we met through Sjogren’s. My worst symptoms are; the severe fatigue, extremely dry eyes, mouth, and skin. I’ve had several thyroid biopsies that were benign, thank goodness.
    It takes me forever to recover from any kind of illness, surgery or any other type of testing that my body sees as invasive. I do have a positive ANA, SSA, SSB.
    I too, believe that I’ve had Sjogren’s and Fibromyalgia going way back to my childhood. It would break my heart when I had to sit out on the fun we were all having.
    Even now I have little energy for fun. It’s been a struggle with family and friends, getting them to understand my limits.
    I guess it could be considered a plus in that you really find out who your true friends are. I do my best to stay positive, one day at a time.

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  2. I wish we would not have Sjogren’s in common either! I appreciate your friendship, and your willingness to share your life with me through the good and bad. It is a blessing that we can learn from each other, and have true understanding of the day to day difficulties as we attempt to make the best of our lives with Sjogren’s. Thank you for reading, and sharing some of your symptoms / struggles.

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  3. You’re welcome! I’m glad to see you back on Word Flirt! We do have so much in common and are always learning more .
    You are my biggest supporter!! I remember after being diagnosed, crying and feeling so confused and all alone bc no one would ever understand. So when I found you through the support group, I was so relieved!! Of course not happy that you suffer w the same syndrome, just happy to know someone else would understand.

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  4. So sad that those who suffer this rare and complicated affliction have to deal with so much. In my eyes you are all very brave heroes. I assure you all that you shall be assured of my prayers and any support I can offer you. Thank you so much for the wonderful article and enlightenment of this condition.

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  5. Thank you so much for sharing your information and your life. I know your problems started years ago, but as we all age we fear of being attacked by all sorts of diseases, and never knowing what they were and what they could do about them until too late. I’m also sorry you had to go through so much just to find out what ails you. You are a strong woman. And I enjoy your blog all the time.

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    • Claudia, thank you so much for your kind words and feedback on my Sjogren’s story. There are many days I do not feel strong, but telling my story makes me
      realize I am…..and I appreciate you saying so too.

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