Autoimmune Pancreatitis

Posted by harper7745 @harper7745, Sep 8, 2019

Does anyone have an autoimmune pancreatitis? Is Mayo Clinic in Jax a good place to start for 2nd opinion?

Interested in more discussions like this? Go to the Autoimmune Diseases group.

Hello @harper7745, There is a Mayo Clinic Newsfeed – Rituximab Maintenance Therapy for Autoimmune Pancreatitis that may provide some information for you here: https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed-post/rituximab-maintenance-therapy-for-autoimmune-pancreatitis/

If you would like get a second opinion from Mayo Clinic, you can find the contact information for the Minnesota, Arizona and Florida campuses here http://mayocl.in/1mtmR63.

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@johnbishop

Hello @harper7745, There is a Mayo Clinic Newsfeed – Rituximab Maintenance Therapy for Autoimmune Pancreatitis that may provide some information for you here: https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed-post/rituximab-maintenance-therapy-for-autoimmune-pancreatitis/

If you would like get a second opinion from Mayo Clinic, you can find the contact information for the Minnesota, Arizona and Florida campuses here http://mayocl.in/1mtmR63.

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Thank you for the helpful information. Presently I am on Prednisone for 2 months. Took Prednisone for 2 weeks and MRI showed great improvement, Had the CP stool problem which kind of went away, but came back, so GI put me on Creon. I was losing weight and many stools. I plan to take your advice after this Prednisone Rx is over. Louise Harper

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How does one get an auto immune pancreas? Does that mean I have an autoimmune disease?

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@harper7745

How does one get an auto immune pancreas? Does that mean I have an autoimmune disease?

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Hi Louise @harper7745, I think your question is a good one but as members we are not able to diagnose anyone. We can share our experience and suggestions based on what we have experienced. Have you asked your doctor about your diagnosis?

Mayo Clinic has some information here on Autoimmune pancreatitis – Symptoms & Causes
https://www.mayoclinic.org/diseases-conditions/autoimmune-pancreatitis/symptoms-causes/syc-20369800

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@johnbishop

Hi Louise @harper7745, I think your question is a good one but as members we are not able to diagnose anyone. We can share our experience and suggestions based on what we have experienced. Have you asked your doctor about your diagnosis?

Mayo Clinic has some information here on Autoimmune pancreatitis – Symptoms & Causes
https://www.mayoclinic.org/diseases-conditions/autoimmune-pancreatitis/symptoms-causes/syc-20369800

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Thank you for such an informative website. My doctor diagnosed me with AIP because my MRI so improved after 2 weeks of steroids. But we didn't discuss how you get an AIP. Louise Harper

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I am not having symptoms at the present time. Have been off steroids for 12 days. I take Creon which helps my weight gain and stools.
I really would like a 2nd opinion to see if I really have an AIP. Thank you, Louise

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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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Hi @harper7745 you may have noticed I moved you post to this discussion you started on autoimmune pancreatitis per @johnbishop's suggestion.

That's great the inflammation is gone after started creon. What information did you doctor provide to you when you first started on creon?

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@harper7745

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.

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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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About 3 months ago I was diagnosed with Auto-immune pancreatitis; ECRP biopsy and blood indicators show no sign of cancer. They put a stent in to open my bile duct. I did an 8 week course of prednisone (40mg/day for 4 weeks, then reduce by 5mg each week for the next 7 weeks.) During that time I felt okay except for some prednisone side effects. About a week after the prednisone ended, I started feeling upper belly/back pain, got a CT scan and discovered the pancreas was still angry and swollen and blocking the bile duct. Another stent, more biopsies, blood work etc.; still no indications of cancer. I started on another prednisone course, 1 week each at 40, 30, 20, and 10mg along with a 50mg/day dose of Imuran. I am 2 weeks into it and am feeling dizzy and upper belly/back pain again.

My questions: Is this auto-immune pancreatitis? What else could it be? Should I get a second opinion? This will require me to fly to another doctor/facility.

Thanks so much for the help.

Bob

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@bobb46

About 3 months ago I was diagnosed with Auto-immune pancreatitis; ECRP biopsy and blood indicators show no sign of cancer. They put a stent in to open my bile duct. I did an 8 week course of prednisone (40mg/day for 4 weeks, then reduce by 5mg each week for the next 7 weeks.) During that time I felt okay except for some prednisone side effects. About a week after the prednisone ended, I started feeling upper belly/back pain, got a CT scan and discovered the pancreas was still angry and swollen and blocking the bile duct. Another stent, more biopsies, blood work etc.; still no indications of cancer. I started on another prednisone course, 1 week each at 40, 30, 20, and 10mg along with a 50mg/day dose of Imuran. I am 2 weeks into it and am feeling dizzy and upper belly/back pain again.

My questions: Is this auto-immune pancreatitis? What else could it be? Should I get a second opinion? This will require me to fly to another doctor/facility.

Thanks so much for the help.

Bob

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Welcome Bob. You'll notice that I moved your message to this existing discussion about autoimmune pancreatitis.
– Autoimmune Pancreatitis: https://connect.mayoclinic.org/discussion/autoimmune-pancreatitis-1/

I did this so you can connect with other members like @harper7745 and @hlj.

Bob, it does sounds like you'd benefit from a second opinion. If you'd like to request on appointment at Mayo Clinic, click this link to get started: http://mayocl.in/1mtmR63

I'm glad that cancer has been ruled out.

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