Anyone with autoimmune pancreatitis??

[catzz]

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?

[cudagirl]

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

[DT10]

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 (abdominal) 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).

[karajo]

what are the symptoms of AIP?

[catzz]

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  

[catzz]

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...    ?

[karajo]

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.

[DT10]

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.

[catzz]

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.

[DT10]

FYI
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.

[catzz]

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.

[DT10]

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.

[cudagirl]

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....

Pam

[cudagirl]

I was wondering if you know, is AIP hereditary.  My brother was told 2 days ago he has pancreatic cancer.  I really feel he has the same thing I do.  He has kidney and lung masses just like me.  I tried to talk to him about it, but he is still in the shock of the news.  I understand that, I went through it as well.  Just wondering what you think?

[catzz]

Very sorry to hear about your brother.  I gave AIP and hereditary a cursory google but would take some careful research (into the limited AIP research itself) to see if any studies have made a familial connection.  The tendency to autoimmune disorders in the general sense can run in families though may manifest itself broadly. That being said, if your brother's doctors are aware of your link to pancreatic disease through autoimmune and the fact that AIP historically has been misdiagnosed as cancer, certainly they will investigate for AIP straight away.

[karajo]

Very interesting.  

Hopeing I could share a little about this subject that concerns me.  Shed any light if you could.

I had my galbladder taken out 3 years ago.  Continued to be nauseous.  As it turned out I was dx w/ lupus about a year ago.  Here recently though, bilirubin has been showing up in the urinalysis.  I've traced it down to a supplement I have taken for many years.  Don't know why all of the sudden it is causing the elevated bilirubin.  When I say bilirubin, it's +++.  Sometimes when I haven't taken the supplement (5HTP) I have a trace amount.  I'm trying to make this short.  Anyway, I have also begun to have really sharp, stabbing pains in the upper right quadrant abdomen.  So extreme I can't talk during these attacks.  Praise the Lord, they don't last too very long.  But my whole upper abdomen is sore like I've done a million sit-ups.  I recently had an abdomen CT done.  Haven't gotten the radiologist report back yet.  

Does any of this sound like what you folks have been going through?  My liver functions have been normal and they say I'm not jaundice.  My eyes are always red (probably lupus related).  They certainly don't look bright and clear like they used to.

Just so you know, 5HTP stands for 5 hydroxytryptophan.  This is the chemical ingredient in milk and turkey that makes you sleepy after consuming them.  There is NOTHING in this supplement that should cause an elevated urinal bilirubin.

Thanks so much for you input.

Do you have other issues with an autoimmune disease?

[DT10]

Sorry to hear about your brother. As Catzz says make sure they are sure it is not AIP. I was misdiagnosed and several very well credentialed doctors in both gastro and oncology were quite sure I had pancreatic cancer. Luckily there was someone who was very aware of the aware of the AIP symptoms.

Re: Hereditary Issue:
My "research" and feedback from doctors is the same as catzz. In my family there is a sprinkling of autoimmune problems. My sister has colitis, a niece has type 1 diabetes, a cousin has colitis, an aunt has rheumatoid arthritis and my mother had pulmonary fibrosis all thought to be autoimmune problems. When given my input the doctors seem to nod in recognition but the stats confirming this are more suggestive than conclusive.

[DT10]

My cramps over the past year have become, finally, less frequent. I described the pain as a general but severe tightening of my entire abdominal area. I even said it feels like I'm having a contraction :) The other way I described them was it felt as though someone had punched me in the solar plexus (even tho that doesn't exist) that literally took my breath away. I would have to lie down, breathe purposely and it would slowly over an hour or so diminish and go away. It was a bit more intense on my right side but only slightly off center. The docs would always ask about pain in the back (typical of pancreatitis) and I never had any pain there. Could never come up with any definitive correlation with anything e.g. what I ate, how much I ate etc. They gave me Nexium 2x a day to calm the stomach but that had no effect at all.
Still a mystery.

[catzz]

Your symptoms are sure perplexing.  Besides the nausea, are you having other GI probs i.e. diarrhea that could indicate a post cholecystectomy syndrome which some people suffer from after gallbladder removal?  Odd about the bilirubin.  My bili was normal during recent flare and though no jaundice, I still had the intense itching and dark urine which was puzzling.  

Wow, seems there's quite a variety of symptomatology and onset re AIP. I only get mild tenderness over the pancreatic and bile duct area, sometimes mild cramping in mid and lower abd. The only times (very rare) I've had nasty pain attacks, they followed a heavy or rich meal -and- a normal sleep - but nailed me around 6am next morning. I've never had back pain related to pancreas.  I try to go easy on food quantities most of the time, but only the rare pain/attack is hours later if I do indulge and the pain would start just under ribcage slightly to R side, crescendo into a scary tightening/squeezing affair, let up, then maybe build again, residual tenderness rest of day.  (A gentle reminder re future menu choices..)   I also have GERD, likely related, and am on Nexium which works great.

[jehansalem]

Good morning:



I'm a cuban young girl of 26 years old, caucasian type that is looking
for a team or a good diagnostician online, and as I see you are social
workers maybe you can help me. I'm very ill but no one knows what's
happening to me. I've seen so many doctors in this week and the matter
is becoming worst by the hour. I feel like dying, please gime a way to
contact some doctor. I beg you. I'm alone in Kiev and noone is helping
me, because they don't know.



The symptoms:


My syntoms started few months ago, but they were random, I felt dry
throat and mouth and I needed to force a lot of water that gave me the
sensation of acid in the digestive tract and almost didn't take away the
thirst or the dryines, so I usually took some tea or instant coffe with
me and after that I felt my digestive tract complete in burn, and
couldn't swallow o create saliva, making me some times woke up looking
for air because the drynes of the larynx, it was stuck the movement.
Then i decided t change my diet, eating more fruits and vegetables and
desapairing meat and dairies, milk or coffe. In this month trial for
being vegan I lost appetite and didn't have cravings, I was eeating less
and my irritation skin problems and infeccion for candialiasis in mouth
and vagina went to a less populated state. It also give me a dry skin
eliminating my very active adult acné. and my giardiasis eres also less
problematic. I was diagnosed with cronic giardiasis at age of 16.

After a change of diet because all this the problem got worst. The water
didn't dry me and I was drinking water and eating fruits for the single
purpose of creating saliva. I thought that maybe boiling the water
created a poisoning reaction, because I was using iron pots with white
keramics but scratched in several parts, and the water turned brownish
when boiled. Then I stoped drinking tea with boiled water, I puted to
the sun to soak. Last week I ate fruits having a poisning sensation in
blood, skin and digestive tract, felt like I had fire everywhere,
literally with uncontrolable shaking for a sensation as cold. And of
course my sleeping problmes. The night that I became sick, 7 days ago I
ate little pieces of  out of season watermelon, banana and a white fruit
form Ukraine, like pear kind of taste and feeling. When I ate that I
felt like was stuck in my throat and didn't move, I couldn't salivate in
my left side where the food felt stucked and didn't move until I started
tio force saliva more and more, and making palpitations and my heart
work harder for making this move. I went t the next day to the otorrino
naringolgist to take off the food, and she said that there was nothing
there, and prescribe me medicine for the nerves. Next day I felt worst,
because I have the sensation of having the food moving and getting stuck
very slowly and have a dry throat and was taking constant water to
salivate the tract. I also feel like the yeast or candiliasis infection
went rampage on mouth, throat and esophagus, I made an endoscopy and
resulted clear. thay say the check for infection or bacteria and nothing
resulted, again medicine for nerves that I ve been taking and shange
nothing. The prblem is that I can't sleep since a week ago, I'm anxious,
can't eat anything and I'm drinking tons of water, als my feel doesn't
smell, my pee is almost white. I did poop onces two days ago and was
nromal color and sticknes, it didn't make any problems to come, I
usually have diarreah and in the vegan diet I had diarreah also, the
food went out almst unprocessed. The last days since the problem with
the feelibg of stuckness started more nd more organs felt like being on
pressure, I feel the blood very intense in different parts. The
esophagus, the middle left part in my poin of view, the right for the
person watching me. The parte where I felt the first course of stickness
is also sensible. I had hurtburn from candialiasis infection and I
started on antibiotics: amoxicillin and  nystatine on suspention for
only two days, and my entire body feel very dry, including my vagina,
anus and between legs. the problem is that I don't have fever or any
sign of infection, not the normal trhoat irritation or plaques. I just
can't create saliva and felt like moniliasis on my digestive tract
making me feel with hurtburnt. I can't sleep, because every time  I try
the entire digest problem and acidic poisoning get worst, stping to have
countrol of my drinking water makes me very dry and poisoning feeling
and also lijke I ate fire, no creation of saliva at this point. I
haven''t sleep in one week now, and I'm feeling nervous and lost focus.
My skin if  yellow and I've been loosing hair for years since I came to
Ukraine to live with my cuban boyfrined that have the same symptoms of
yeast or candialiasis infection but doens;t feel anything. I feel like
my heart is working to much, I tried to eat some pourrisj of
vegetables,and I added some milk, I could eat without apparent problem.
I don't feel any paint, I'm feeling like I'm fool of dirt in the ears,
because I'm not creating grease. Last night I was having a reiki sation
and I has a very dry mouth and throat and not saliva making the movement
very deifficult. I tried to take a benadrilin but it got stuck in the
tongue and I decided not ot take it. I'm afraid that if a I fall sleep I
will stop breathing or controllling my body berserked state. I drank
tons of normal water, mineral water, saltmineral water, with gas, and I
don't get saliva back in the walls.

Please, I feel like dying, I've been under a lot of stress and looking
waht do I have and what could I do for treatment.

HElps please. i also experimented several times overheating like tirring away
sensation in several parts of my body several times between the jaws and the mouth at the edge of the face.
My body is overeacting to heat, which is abnormal in me. and now I'm having kind of defness in both ears feeling very stuck the aerea ingeneral.
I'm very dry and I use to be very grease type of person and full of hedors in muth, ears body, not feet.



Thanks for taking your time and please help me.



Jehan Sandra Salem Bidondo.

[cudagirl]

My brother goes in for a biopsy on Tuesday next week.  If that is negative, then I am going to push for them to do a IgG4 on him.  I went through the same thing, and almost had a life changing surgery because they thought I had cancer.  My CA19-9 was negative and they could never find any cancer cells in both biopsies.  I really feel this is AIP, but I will know more next week...thank you all for your posts.

Pam

[suegaz]

Hi , my name is sue and i was diagnosed w AIP in feburary this year. Had the gallbaldder removed, stent in and out again, been on pred, 1st time worked like a dream then when weaned went straight back to pain and high ELFTS  so went back on again, im trying a slow wean again now, only on 8mg at the mo but feeling like its coming back, my next option is imuran...is anyone else on this and if so hows the side affects? living in australia and worried about the sun thing....So sick of being ill though that im at the point where i think going on this maybe the answer...My main complaint is really bad back pain in the spine and up to the left shoulder, does anyone else get this?

[catzz]

Hi Sue -    I'm in much the same spot as you right now as regards prednisone (for brief history, see my 2 posts above from Aug 1).  At this time, I'm in week 7 of a 12 wk run of prednisone (this time was started at 60 mg), now at 15 mg.  This is the 3rd try since last Dec and I have a sinking feeling that as the dose continues to taper, my LFTs and symptoms will start up again.  My gastroenterologist said let's try the pred once more before trying Imuran.  Some people do excellently on Imuran side effectswise, many do not, a whole litany of miserable side effects - including pancreatic tumors.  There is very little data or studies re Imuran's effectiveness with AIP but it does have good results on autoimmune hepatitis.  I'm so fed up with prednisone - messed up sleep, moon face, wild monster in stomach yelling for FOOD 24/7 and the fact that it has NOT as yet eradicated the AIP.  Prednisone does however work quickly initially to relieve and settle the inflammation during a flare-up, wish it was having a better longterm effect.  I have an appt to see my gastroenterologist in 2 wks - to discuss options in advance before I run into trouble again.  At this point I'm willing to give Imuran a try.

If you google Imuran, side effects, you can find out more about it.  There is also a very good website where users have commented on their experiences with this drug.  

- Sandy

[fhoole]

Hi,
I have had lupus for 20 years.  Most likely I have autoimmune pancreatitis although I don't think I have had IgG typed.  Over five years I had cramping (like a muscle cramp but upper left quadrant).  Had the spleen checked out, scanned for stomach dumping and duct blockage with no diagnosis.  The gastroenterologist suggested a botox shot to relax the muscle.  I quit swimming, skiing, and trying to polish my toenails because the thing would double me over.  Then I had an acute attack of pancreatitis...unbelievable pain and lasted all night vomiting bile and blood.  The ER docs scanned the heck out of me with contrast dye and could see no liver or pancreas or duct problems.  I stayed in the hospital for five days to calm the pancreas and remove the gall bladder (no stent.)  The pancreatitis remained chronic after that with mild elevations of enzymes.  200mg Imuran was of no help for me at all.  I had run the course of drugs for lupus so was given rituximab off-label.  I have never since had any pancreatic symptoms...except...when the rituximab wore off after 10 months.  Re-treatment put it all back into remission.  

That's my weirdness!  :)  (...but I would like to have my gall bladder back, please)  Hope Imuran works for you.  The only side effect I had was bleeding and bruising, but not too terrible.  Some people have digestive problems, but I did not.    

[catzz]

That's interesting about rituximab helping the pancreatic symptoms.  You should however be tested for IgG subclasses to see if it is indeed AIP.

I've only ever had mild pancreatic pain - which is often the case with AIP vs chronic pancreatitis.  Main problem is biliary obstruction if my LFTs spike.

Keep well and pls keep me posted.

Sandy

[valdis_g]

Can anyone recommend a doctor in the Washington, DC area who knows AIP?  I was just diagnosed with AIP.  My Igg4 is 6x normal.  My gastroenterologist admitted he was not very familar with AIP.  I asked two other doctors, but neither could recommend anyone who knew much about AIP.  The only doctors I found on the web who are known to treat AIP are at the 3 Mayo Clinics, which are far from DC.

[catzz]

Perhaps your gastroenterologist might be able to investigate for docs in DC who subspecialize?  Also, specialists who treat autoimmune hepatitis (somewhat more common than AIP) might be easier to locate and could come up with a name if they themselves don't treat AIP.