Angella - posted on 05/19/2010
Yes, I have it. I'ts been about 8 years now I think. AT first it hit my neurological system. I could barely walk I was so off balance. And the fatigue.. I was in bed for 10 days before seeing the doctor the first time. Then came the arthritis. I think my case is far more complicated then the majority of people plus I was young when diagnosed too which isn't typical. I was 27. Anyway, I haven't been able to work at all during these years. The doctor can keep it under control most of the time as far as flare ups go but the fatigue just won't go away. Yes, i've had the dryness too...my salivary glands in the cheeks kept getting infected until they gave up and stopped functioning. But my dryness comes and goes which I've never heard anyone else mention. So I'm lucky that I'm not too damaged in that way yet. I take hydroxychloroquine (the docs say to take it for life if you have sjogrens), prednisone, sulindac, flexiril, and i've tried methotrexate.
Basically this disease is an auto immune disease which means your body is attacking itself. The doctors counteract that by giving you drugs that cut the immune system down enough to give you relief but without making you too susceptible to all the "bugs" that go around! I generally try and stay away from strong doses during the cold and flu season.
I wish you the best and would be glad to answer any other questions you have....
Karen - posted on 01/23/2010
i also been diagnosed with along with lupus!and besides affecting your eys and giving giving u a dry mouth it can also damage your organs!kidneys lungs your heart!it's a autoimmune disease just like lupus!but i think it's harder to diagnosed with me both diseases showed up on antibody testing!
Sandi - posted on 01/15/2010
i have sjogrens as my Mom did and my older sister also has it. One of my 2 daughters also has sjogrens. Two important things to do: Find a good eye DOCTOR and have your eyes checked every 6 to 12 months and also a dentist who knows and understands sjorgrens disease and how it can effect your teeth. Because your eyes and mouth will not water as much you are prone to both eye and teeth issues. Read all you can about it and ask questions. I take Plaquenil twice a day and that has helped I think. I also keep eyegel handy and use it often in my eyes. I was not lucky enough to have been diagnosed before the damage tomy teeth was done and i lost them all. Never had a cavity, my teeth began to dissolve from the root up.
The website listed is wonderful for information. I can not stress enough making sure both your eye dr and dentist know and understand sjogrens and if you go to a skin dr they need to be on the same page too. IT IS SO IMPORTANT all your drs know because it will effect your treatments for other ailments and diseases.
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