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?

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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@harper7745

Does anyone have an autoimmune pancreas? What is the treatment? Is Mayo Clinic good for diagnosis?

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Hi @harper7745 — I'm wondering if you meant to post in your previous discussion with the same name. I'm tagging our moderator @ethanmcconkey to see if we can move your post here:

> Groups > Autoimmune Diseases > autoimmune pancreatitis
https://connect.mayoclinic.org/discussion/autoimmune-pancreatitis-1/

As far as to what causes pacreatitis, here is some information from Columbia University Irving Medical Center on the causes of the types of pancreatitis.
https://columbiasurgery.org/pancreas/causes-pancreatitis

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Does anyone have an autoimmune pancreas? What is the treatment? Is Mayo Clinic good for diagnosis?

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Hi @harper7745 you may have noticed I moved your post to this existing discussion you started on autoimmune pancreatitis so that all your posts would be in the same place. Simply click VIEW & REPLY in your email notification to see your post.

As @johnbishop posted in his response to your initial post on this topic, here is a good article about a potential treatment option for autoimmune pancreatitis: https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed-post/rituximab-maintenance-therapy-for-autoimmune-pancreatitis/

Back to you @harper7745, are you currently experiencing symptoms? If so, what symptoms are you having right now?

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@ethanmcconkey

Hi @harper7745 you may have noticed I moved your post to this existing discussion you started on autoimmune pancreatitis so that all your posts would be in the same place. Simply click VIEW & REPLY in your email notification to see your post.

As @johnbishop posted in his response to your initial post on this topic, here is a good article about a potential treatment option for autoimmune pancreatitis: https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed-post/rituximab-maintenance-therapy-for-autoimmune-pancreatitis/

Back to you @harper7745, are you currently experiencing symptoms? If so, what symptoms are you having right now?

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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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@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, There is another discussion with the same name that you created in Sept of last year. I'm tagging our moderator @ethanmcconkey to see if we can move your post to the other discussion here:

> Groups > Autoimmune Diseases > autoimmune pancreatitis
https://connect.mayoclinic.org/discussion/autoimmune-pancreatitis-1/

@clairep, @susandc, @arnold1957, and @sue6408 have discussed Creon in other discussions and may have some information to share with you.

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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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