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Old 08-12-2003, 04:21 PM   #1
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Location: los angeles, CA, USA
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myhome1 HB User
Post Autoimmune pancreatitis

Hello Everyone,
I am 26Y old female who was recently diagnosed with Autoimmune Pancreatitis. I donít abuse alcohol and I donít have gallstones. It all started 3 months ago with pain and blood test (lipase over 700 amylase over 200) I was diagnosed with pancreases. Doctor kept telling me that it would go away since I am so young so far I lost 15 pounds. Since then I had abdominal ultrasound (4cm mass was found) and CT scan (normal (?)) The problem is that my blood test results are getting worse with every week.
Recently I had ERCP test that revealed abnormality in bile duct and blockage that was removed (Dr.ís reading shows cancer, but biopsy is negative). After that I had Endoscopic Ultrasound that basically revealed the same thing Ė looks like cancer, buy with good biopsy. The decided to wait with the surgery buy put me on Prednisone for 20 days.

I need you help of understanding whatís wrong with me. Thank you for your help.

 
Old 08-31-2003, 06:51 PM   #2
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jlc1012 HB User
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Hello, I just wanted to let you know you are not alone. My 31 yo husband is going through the same thing right now. It started 2 months ago with pain in his abdomen and back. The er doc. said it was pancreatitis. Amalysis- 1500 lyp- 750. sent him home on fluids. Ended up back in er next night, they admitted him for 1 week in hospital. Said his gallbladder was not working, removed it. While in there they found a blocked bile duct. 2 days later he became jaundice. he was admitted back into hospital. Mri confirmed bile duct block tried ercp to put stent in to open but failed because it was too blocked so they went through his side into his liver and placed atube w/ bag attached to drain bile. He was then transfered to a bigger university hospital where they did another mri this time a mass showed up on the head of his pancreas. They came in and told us he had pancreatic cancer but it was treatable with surgery. that night they did an endoscopic ultrasound and said they found no mass in there. biopsy all came back clear. the next day they told us they were almost positive it was autoimmune pancreatitis. they took blood and had to send it to a lab in CA. We are now waiting for the results. They said it is treatable with a steroid. He was sent home from the hospital yesterday since there is nothing they can do until the lab results come back in 10-12 days. He has lost a total of 50lbs in the last two weeks.

Has the medicine help any? Are you jaundice? I hope everything works out for you.

Good luck

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Old 08-31-2003, 10:18 PM   #3
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Join Date: Aug 2003
Location: salisbury,md,united states
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cjones HB User
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I have autoimmune hepatitis and I never drank alcohol or taken drugs but I have this disease. It came a few months after giving birth to my first child. The day I was coming home from the hospital and I decided to get the Depo shot. So I believe that the depo had to have something to do with it. Also, in order to get it under control I had to take prednisone and Immuran and then they put me on prednisone and Neoral and prevacid and finally my body responded to it

 
Old 08-31-2003, 10:24 PM   #4
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Harry HB UserHarry HB UserHarry HB UserHarry HB UserHarry HB UserHarry HB UserHarry HB UserHarry HB UserHarry HB User
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I have had a mass on my pancreas for 10 years that does not affect my enzyme levels.

When I had 2 1/2 feet of my colon removed last year, I asked the surgeon to look at the mass, aorta dilation that some say is an aneurysm and adenal glands that shows problems with CT scans. The surgeon and the assisting surgeon said my pancreas has no mass , my aorta is OK and my adrenals donot have any adenomas. But, the CAT scan showed them up again 8 months later.

I had to have an ultra sound of my arorta on 8/6/03 because an X-ray indicated it had enlarged at least 3/4"---- ultasound indicated it had not changed in 2 years since the last exam -- 8 months before colon surgery.

But, high enzyme levels and weight loss are valid indicators that something is going on???

As you may know doing an ERCP causes pancrititis in 25 % of patients.

I wish ya'll well !!
God Bless---Harry

 
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