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Does anyone have an autoimmune pancreatitis? Is Mayo Clinic in Jax a good place to start for 2nd opinion?
Does anyone have an auto immune pancreas? I was diagnosed with it. Presently on Creon. Last CT Scan showed partial atrophy of the pancreas. Inflammatiion gone. Is anyone else on Creon? Is it for life? Also diagnosed with Pancreatic Insufficiency. Lost 18 lbs., but gained 5 back since on Creon.
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Hello @harper7745 I’d like to know a little more about AIP. How did it first manifest for you? Have you had problems with low insulin and maybe diabetes? You certainly sound like you have things under control right now.
Dr gave me no information on Creon. Just the dose and when to take it. It manifested by weight loss, fatty stools, amylase normal, lipase a little elevated..149. Had CT scan…showed inflammation. Had an EUS with biopsy. Showed edema of head. Biopsy sent to Mayo. Neg. for cancer. GI sent me to oncology surgeon for 2nd opinion on the biopsy. Neg. for cancer. He put me on steroids for 2 weeks and did an MRI. Showed inflammation gone. He diagnosed me with AIP because he said Steroids is the only RX for AIP, they won't work on any other kind. GI put me on 2 more months steroids, and CT showed inflammation all gone, just mild atrophy of pancreas. I feel like I do have it under control. Wondering if I have to be on Creon for life? Luckily didn't develop diabetes. Louise
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