Autoimmune Disorders Community
4.07k Members
902019 tn?1249865014

Anyone with autoimmune pancreatitis??

I was diagnosed 2 years ago with AIP, have a 25 year history of autoimmune disorders (eosinophilic vasculitis, mild Sjogren's).  Usually have done well with prednisone for the various flare-ups but with AIP, still recurring symptoms and the elevated IgG4 periodically.  Next step may be Imuran.  Is there anyone out there who has had good results with Imuran for autoimmune pancreatitis?
156 Responses
422425 tn?1307996590
I had AIP 2 years ago and they thought I had cancer.  I have been on steriods since Thanksgiving.  I did take Imuran and did well.  I had my IgG4 tested 2 months ago and it is finally normal.  It was elevated for 2 years...Good Luck
989524 tn?1249426112
I was diagnosed (luckily) with AIP a year ago May. Was on Prednisone for 9+ months and now on 200mg/day of Imuran for a few months. Will probably remain at this dose for a few more months. I have had no sickness at all, not even a cold through all of this. While I feel fine I have had occassional nasty abdomnal cramps (from what no one knows) and my tests while OK are not back to normal. My pancreas apparently functions fine re insulin but does not function fully re digestive enzymes. I have lost significant weight as a result. Not a recommended way to diet.
Looking for list of top doctors for second opinion (Not at all unhappy with my present physician).
434278 tn?1324709825
what are the symptoms of AIP?
902019 tn?1249865014
Hi there!   You're the 3rd person (that I'm aware of) on this site with AIP.  I was diagnosed in June 2007 after several mths of problems with common bile duct stricture, elevated liver function tests and 28 lb weight loss which ultimately turned out to be secondary to AIP. Gallbladder was kicking out a lot of sludge which made matters worse and was removed.  I had a stent placed - which became infected (into hospital for IV antibiotics), then it was replaced. Finally was sent to a gastroenterologist who recognized likely AIP and sent me to a subspecialist who performed an endoscopic ultrasound which showed typical hypoechoic texturing at the head of the pancreas.  And the diagnostic IgG4 test was about 8x higher than normal.  A 6 wk run of prednisone saw the IgG4 numbers drop considerably.  

If your Imuran treatment is working, you shouldn't still be dropping weight as a result of digestive enzymes.  Have you had IgG4 bloodwork?  How are your liver function tests these days?

I coasted along ok till last fall, symptoms started again and by xmas was in full AIP flareup.  6 wks of prednisone (starting at 40 mg, then weaning), and by mid March liver tests were elevated again so had to do 12 wks of prednisone.  Just completed that in June and within 5 wks my LFTs were up again, no surprise, was feeling so rotten.  I told my doc that I wanted OFF the merry-go-round and was ready to try Imuran - despite the lack of data re it and AIP and the serious potential side effects of Imuran.  He suggested maybe give the prednisone just one more go (starting 60mg weaning dose over 12 wks) on the chance that this'll do it before commiting to a trial of Imuran.  I'm in Week 2, feeling waaaaay better symptom-wise for the moment, though we know this is the band-aide effect of steroids.

Not sure what to tell you re second opinion / top drs in the field. You'd need to have your gp or gastroenterologist find out who might specialize in AIP in your region, perhaps someone who treats autoimmune hepatitis which is somewhat more common.  Please feel free to direct-message me to my page.

- Sandy  
902019 tn?1249865014
The symptoms of autoimmune pancreatitis for me were weight loss, pale stools, gallbladder-like attacks (but longer-lasting) and elevated liver function tests - which initially were thought to be a bile duct obstruction complicated by blockage of gallbladder sludge.  Stenting the common bile duct and later removal of gallbladder (which was in bad shape) still didn't solve the problems.  See my response (above) to DT10 for further info.

The malfunctioning pancreas by this autoimmune disorder affects the liver, can cause the bile ducts to obstruct and impede the flow of bile - which affects the digestive enzymes thus causing malabsorption and the weight loss, then can lead to jaundice; also at this point the accompanying indescribably horrific systemic itching - which is truly...    the worst symptom of all.   Hope you're not having any of this...    ?

what if your Lipase and amylase tests are normal??
434278 tn?1324709825
Thankfully I'm not having those type symptoms.  I have nausea...sometimes pretty bad, but it's not bad enough that I've lost any weight.  I occasionally have elevated bilirubin in my urine, but my liver function is normal.  I don't have a gallbladder.  It came out a few years back when all of my crazy symptoms started.  My gallbladder was not functioning.  Was eventually dx with lupus.

Thanks so much for all of your input.  I'm still learning about these autoimmune type problems.  You have really been through a lot.  I pray my situation don't turn into something like that.  I am dealing with enough w/o adding an organ to the envolvement.
989524 tn?1249426112
Sorry for delay in responding. Busy busy busy :)
I have had the Igg4 as well as liver function tests numerous times although not lately. My doctor can't explain the cramps (not in the back which is the usual area for pancreatitis) nor the weight loss (very gradual over time and definitely not from dieting). I have had recent CT Scan and while everything is not completely back to normal (enlarged) it is stable. Doctor not concerned ... apparently that is sometimes what happens in some cases. My original episode was quite severe with significant jaundice, blockage, emergency ERCP etc. Had stent in bile duct for over 9 months (replaced every 3 months).
Tough to get info on this problem. It is apparently quite rare and only recently correctly diagnosed. Nice to chat with someone who knows.
902019 tn?1249865014
Ah - so you've been down the ERCP and stent road.  I had 2 stents which oddly lasted exactly 165 days each till they packed up - go figger.  First one obviously was only partially working as during that winter I was dropping weight steadily whilst eating everything in sight.

Hope your cramps ease up, bit of a mystery.  If you haven't had your LFTs done lately, that's the first thing that might signal Trouble.  I have mine done every 2 mths, more often if I'm suspicious of a lurking flare.  That being said, they tend to elevate some time after I've been noticing creeping symptoms and feeling generally fatigued/crummy.

AIP is indeed rare and unfortunately there's limited data.  Some studies been done in the states, also Japan.

989524 tn?1249426112
Before I began to take Imuran my doctor ran a test called the "6 Thioguanine (6TG)". I am never sure I have all the right info on these matters but my understanding is that it is a genetic test to see if one is susceptible to bone marrow loss with Imuran (apparently a potential nasty consequence). I was borderline and had to be more closely monitored. The reason I mention this test is that it may be relatively new since my sister has been on Imuran for years and never took this test. May want to ask your doctor.
The other thing you may want to ask about is a comment I saw on the Mayo Clinic site that said that Imuran can cause or contribute to Pancreatitis.
I'd love to know what he/she says on both counts.
902019 tn?1249865014
Thanks so much for that info on 6TG - will certainly read on it and mention to my specialist next visit (?autumn).  He did explain the possible detrimental effects Imuran can have on the pancreas itself including neoplasm.  Well, I'm hoping this current run of prednisone will be more productive than the last 2 this year and wipe out the damn AIP already.  Meanwhile, it's the end of week 2 of 12 (of prednisone) and sleep is majorly goofed up, feeling pretty wired, face getting rounder, and thoughts that didn't involve  *F*O*O*D*  would be a welcome change.
989524 tn?1249426112
Re: Symtoms of AIP
Before my final weeik when I was in unmistakable pain and had jaudice etc, I had very little sign of a problem. Only in retrospect did I realize that I had had a continuing and unusual thirst and some lack of whiteness in my eyes for about 9 mos. I had passed those things off as "just getting older". Big mistake.
422425 tn?1307996590
Wow another AIP person.  Catzz is the only one I have found until now.  I hope you are doing ok.  I have been down for a while, but seem to be doing better.  Just wanted to introduce myself....

Have an Answer?
Top Autoimmune Diseases Answerers
1756321 tn?1547098925
Queensland, Australia
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Here’s how your baby’s growing in your body each week.
These common ADD/ADHD myths could already be hurting your child
This article will tell you more about strength training at home, giving you some options that require little to no equipment.
In You Can Prevent a Stroke, Dr. Joshua Yamamoto and Dr. Kristin Thomas help us understand what we can do to prevent a stroke.
Smoking substitute may not provide such a healthy swap, after all.