Understanding Sjögren's Syndrome From A Patient's Perspective
Sjögren’s Syndrome – What Next?
Sjögren’s disease not only affects exocrine glands, but can affect all organs of the human body. Some of the most common organs affected are: lungs, liver, kidneys, pancreas, gastrointestinal system, blood vessels, and the central nervous system.
One organ, the pancreas, which functions both as an endocrine and exocrine gland, was affected by my Sjögren’s disease. I was eating 3 meals a day, at least, taking multiple vitamins, fish oil, and vitamin supplements (especially vitamin D). One day, about 1½ years after my Sjögren’s diagnosis, I began developing a rash across my shoulders, on my back. I went to the dermatologist who said it might be psoriasis. I pressured him to biopsy the lesion, which was getting larger quite rapidly. To make a long story short, after the biopsy he said it definitely wasn’t psoriasis but it appeared that I had malnutrition.
I was then sent to an internal medicine physician, who ordered a fecal fat test, and I was found to not be digesting fat. The exocrine portion of my pancreas was not producing enough enzymes, and I was found to have Exocrine Pancreatic Insufficiency (EPI) and, therefore, was unable to properly digest food. Food was fast-tracking right through me. The internal medicine physician prescribed Creon, which replaces the enzymes from the pancreas. I take 4 capsules with meals and 2 to 3 with snacks. This replacement seems to work well for me. Other Sjögren’s patients, if you begin to drop weight, have a huge diet or diarrhea or get an unusual rash, your pancreas (exocrine portion) may be shutting down. Talk to your physician. Online you might find that EPI is more common in German Shepherds than people, but Sjögren’s can affect any organ in the body.
Be vigilant, Sjögren’s can also affect joints, and other autoimmune disease can exist in the same person, particularly rheumatoid arthritis, systemic lupus erythematosus, polymyositis, or schleroderma. As long as we are examining the negatives, lymphoma occurs more frequently in patients with Sjögren’s Syndrome.
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