Information needed please.

by bama Posted 2009/02/05 01:04:37

4 votes
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	yes, here is what I know.	1 vote	25%
	no, I have never heard of it.	3 votes	75%
	None of the above	0 votes	0%

Can anyone give me first-hand information on a rare auto-immune disease called auto-immune pancreatitis, not just pancreatitis. It is very rare and is hereditary. What is the best place in the USA for treatment. My brother has it and the Drs. @ UAB Research Hospital say it is so rare they really do not have enough info to know how to treat it. There is no cure and all they can do right now is treat the pain.

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†Andrea†GAC 2009/02/05 01:09:07

yes, here is what I know.

+4
Autoimmune pancreatitis (AIP) is an increasingly recognized benign type of chronic pancreatitis that can be difficult to distinguish from pancreatic carcinoma but which responds to treatment with corticosteroids. AIP is characterized by the following features: mild symptoms (abdominal pain, weight loss, nausea), usually without acute attacks of pancreatitis, increased serum levels of gamma globulins, immunoglobulin G , or , the presence of serum autoantibodies such as anti-nuclear antibody , anti-lactoferrin antibody, anti-carbonic anhydrase II antibody, and rheumatoid factor , a diffusely enlarged pancreas, diffuse irregular narrowing of the main pancreatic duct and stenosis of the intrapancreatic bile duct on endoscopic retrograde cholangiopancreatography, rare pancreatic calcification or cyst formation, and marked responsiveness to treatment with corticosteroids.
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Electra~Greekbby♥ 2009/02/06 20:42:42

no, I have never heard of it.

+1
I WISH I COULD HELP...SORRY... HOPE EVERYTHING IS GONNA BE OK...
(this pic is 4 ur brother...with love!!!)

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Shinigami_U 2009/02/05 02:31:11

no, I have never heard of it.

+1
I am very sorry T_T. I'm not even from the USA, so I also would know doctors and stuff. But I wish you the best of luck, and also to your brother.

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bama to Shiniga... 2009/02/05 02:55:02

thanks so much

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†Andrea†GAC 2009/02/05 01:09:07

yes, here is what I know.

+4
Autoimmune pancreatitis (AIP) is an increasingly recognized benign type of chronic pancreatitis that can be difficult to distinguish from pancreatic carcinoma but which responds to treatment with corticosteroids. AIP is characterized by the following features: mild symptoms (abdominal pain, weight loss, nausea), usually without acute attacks of pancreatitis, increased serum levels of gamma globulins, immunoglobulin G , or , the presence of serum autoantibodies such as anti-nuclear antibody , anti-lactoferrin antibody, anti-carbonic anhydrase II antibody, and rheumatoid factor , a diffusely enlarged pancreas, diffuse irregular narrowing of the main pancreatic duct and stenosis of the intrapancreatic bile duct on endoscopic retrograde cholangiopancreatography, rare pancreatic calcification or cyst formation, and marked responsiveness to treatment with corticosteroids.

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bama to †Andrea... 2009/02/05 01:14:05

+1
Thanks. He has been on a number of drugs along with corticosteroids, but as soon as he is "weaned" off the steroids, the symptoms come back even worse than before. He has nausea, vomitting, jaundice, severe pain and 0 energy.

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†Andrea... to bama 2009/02/05 01:19:03 (edited)

+2
awwwwwww im so sorry :(

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bama to †Andrea... 2009/02/05 01:21:18

+1
thanks. ask ur sodaheads if they have info or know of someone w/this disease please.

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†Andrea... to bama 2009/02/05 01:25:37

+1
sure

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Miss in love!♥ 2009/02/05 01:05:55

no, I have never heard of it.

+1
sorry

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bama to Miss in... 2009/02/05 01:07:13

thanks anyway.

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