Sjögren’s Syndrome is a lesser-known disease which can occur alone or in patients who have rheumatoid arthritis. Several members of our community responded to the two previous posts I wrote regarding Sjögren’s. Read their comments - Rheumatoid Arthritis and Sjögren’s Syndrome as well as Sjögren’s Syndrome: Common Tests for Diagnosis .
Since there doesn’t seem to be much awareness or support for those living with Sjögren’s, I wanted to ask our community members to share their stories. I am grateful and thrilled that PamelaO , Suz56 , jujumom , and my friend Bubbie have contributed by answering the same ten questions.
Pamela was diagnosed with Sjögren’s Syndrome last summer only months after being diagnosed with RA. She is confident that she had both diseases for at least four years but didn’t receive either diagnosis until she got a second opinion. She also lives with fibromyalgia.
Pamela’s first symptoms were dry eye and unbearable eye pain.
“I felt as if someone had filled my eyes with pepper seeds and poked me in the eye at the same time. The burning and eye pain was constant with no relief from OTC eye drops.”
Her eye doctor tried placing eye plugs into the tear ducts to help sustain tear production. Then she was prescribed Restatis which took about a month to work but has helped substantially.
What are you doing to treat your Sjögren’s Syndrome and/or any other autoimmune disease?
“I am currently on methotrexate 20 mg per week, prednisone daily and Mobic twice a day. I am doing pretty good, although not in complete remission yet. My eye pain and burning are pretty much at bay, for right now.” Pamela shares that she weaned herself off Restasis due to its costs, but does have some on hand as a back-up.
Finally, is there anything else which you would like to share with the community regarding Sjogren’s Syndrome or living with chronic illness?
“Being diagnosed with RA is not something I would have ever wanted to hear. It took months for me to come to terms with those words, Rheumatoid Arthritis. The pain is unbearable and to suffer from SS makes things much worse. But I have finally gotten my health under control, thanks to my rheumatologist. I owe him my life. Not everyone with an autoimmune problem gets SS, but unfortunately I did. Coping with both can be very difficult, but with proper treatment you can improve your quality of life. I am living proof. Restasis will help with tear duct inflammation and bring you relief. At least your eyes wont be burning while your are trying to move around. Any amount of pain relief helps.”
Diagnosed first with Sjögren’s Syndrome in November 2006, Suz was diagnosed with RA in June 2007. Her journey began in March of '06 when she noticed having extreme dry mouth; then her eyes started to bother her.
