Sjogren's Syndrome - Describe Your Experience

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What is Sjögren's syndrome?

Sjögren's syndrome is an autoimmune disease characterized by dryness of the mouth and eyes. Autoimmune diseases feature the abnormal production of extra antibodies in the blood that are directed against various tissues of the body. The misdirected immune system in autoimmunity tends to lead to inflammation of tissues. This particular autoimmune illness features inflammation in glands of the body that are responsible for producing tears and saliva. Inflammation of the glands that produce tears (lacrimal glands) leads to decreased water production for tears and decreased saliva production and dry eyes. Inflammation of the glands that produce the saliva in the mouth (salivary glands, including the parotid glands) leads to dry mouth and dry lips.

Sjogren's syndrome with gland inflammation (resulting in dry eyes and mouth, etc.) that is not associated with another connective tissue disease is referred to as primary Sjögren's syndrome. Sjögren's syndrome that is also associated with a connective tissue disease, such as rheumatoid arthritis, systemic lupus erythematosus, or scleroderma, is referred to as secondary Sjögren's syndrome. Dryness of eyes and mouth, in patients with or without Sjgren's syndrome, is sometimes referred to as sicca syndrome.

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Comment from: Linda, 55-64 Female (Patient) Published: September 21

I have had Sjogren's syndrome since I was a child but did not get diagnosed until I was 30 years old. I had a lip biopsy and other testing done and was diagnosed. I have had to have first all my teeth capped and when they all fell apart I had to turn around and have all implants. The cost was phenomenal. For my dry eyes I take bilberry leaf daily. This has helped immensely. Also I suck on xylitol candies which actually reduce cavities in people with their teeth. This has been a total life saver. I am now able to go into a store without a water bottle by having the xylitol pills handy. National Nutrition sells them by jars of 240 for around USD 11. They are worth it. At present I have had a terrible episode of ultra-severe pain in my hip and thighs. I could not even walk more than a few steps without being in agony. I have had to go on high dose of prednisone and Plaquenil as well as naproxen. Up until now I have been able to manage but it suddenly one day just became debilitating. I do take many supplements such as krill oil and a host of other things that help joint function and so forth. The prednisone is keeping me from sleeping at night but in order to walk I have to take it. It took about 12 days for it to work. Percocet did not help for the pain it was just that bad. Please make sure to take bilberry for the eyes, krill for the joints and magnesium malate as well which is so important. Also I take 4000 IUs of vitamin D and vitamin K2 to help utilize it. I eat a very healthy diet and have very little if any sugar in it. I hope some of these ideas help someone.

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Comment from: Karin, 35-44 Female (Patient) Published: September 28

I was just diagnosed with primary Sjogren's syndrome in April/May after stumbling on an article and realizing I had multiple symptoms that I could definitively trace back at least 3 years. These include dry mouth (with numerous dental issues), dry eyes, GERD, petechia on lower legs, fatigue and muscle/joint pain and periods of neuropathy. However, I have a history of carpal/cubital tunnel syndromes so it's difficult to say if the arm pain and neuropathy are related to Sjogren's or carpal/cubital issues.

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