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902019 tn?1249861414

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?
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Avatar universal
Rituximab stops my pancreatitis in its tracks immediately.  For me, remissions last about a year.  Good luck...hope it works for you.  Fran  
Helpful - 1
Avatar universal
HI- My husband was diagnosed with AIP Type 1 in May 2017, he was on steroid treatment for 4 months.  Relapsed after a month, back on steroid treatment 7 months.  Referred to John Hopkins Hospital. We are from NJ, traveling to MD is not great but willing try anything at this point.  Our next step is infusion treatment of Rituximab. It has taken us 4 months and 3 appeals to get our insurance carrier to approve the drug treatment.  Hopefully it helps.
Helpful - 0
Avatar universal
I had previously posted on this website and was diagnosed with AIP in the summer of 2012 and was put on 6 months of a high dose prednisone taper in which I gained lots of weight and moon face but am glad to report I have been symptom free since and am having my second child since getting diagnosed for a total of 4 children.  I just wanted to put some positive news out there for all those reading lots of scary things. This is my last child though so I am hoping I remain in remission.  Child bearing suppresses your immune system so I know it has been helpful with my condition.  Since getting sick  I have heard so many similar stories to mine and am just so thankful I was able to get in to such an amazing physician who was even aware of AIP at that time because it was evident none of my local physician groups had a clue.
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Avatar universal
Hi Catzz,

He has had his igg4 serum measured-- it was elevated. somewhere in the mid 130 range. We haven't really been given much information yet and are definitely scared. What I have read doesn't seem good at all. He has no symptoms other than his attack, and diarrhea the day after eating something fatty.

Thank you,
Steph
Helpful - 0
902019 tn?1249861414
Very sorry to hear you're going through such a tough time and now your fiance's AIP. Most people respond very well to 1 or 2 treatments with steroids and some have no further issues with AIP, but not all. From what I'm reading, there is an increased chance of pancreatic cancer if the AIP develops into chronic pancreatitis. Complications also include pancreatic lesions and sclerosing cholangitis, the latter I have - stenotic, beaded bile ducts and several inflammatory bouts a year, stent change every 3-4 mths. Been on an immunosuppressant for 7 years.

There is actually quite a bit more literature on-line re this disease compared to just a few years ago. But AIP is tricky, rare and manifests itself in different ways. If you read through this whole thread, you will find people with a variety of symptoms and related issues.

Normalcy....  in part depends on response to steroids. Even with the problems related to my AIP, when I'm not having a cholangitis episode or biliary obstruction (fever, chills, nausea, sometimes R upper abd pain), I feel entirely normal, eat normally (I go easy on fats, avoid major pigouts), alcohol occ'ly and tiny amt, and have been able to work.

Has your fiance had an IgG4 (blood) test?  This helps in the diagnostic process as it often is elevated with AIP which is an IgG4-related disease.
Helpful - 0
Avatar universal
Hey All. My 27 year old fiancé was told today they suspect AIP. He has not had an EUS but was hospitalized a couple of weeks ago for AP. They said they have not seen any growths/lesions just the inflammation. He will be starting steroids. They have told him he will be in a lifetime diet of less than 60g of fat per day and no alcohol. We are looking for any information or support from those who have this- there is so little information on it. What is the prognosis and affiliation with cancer development? The last few months have been so difficult. We lost our newborn, he lost his grandmother, my job is unstable, and here we are. We need hope that we can have some sort of normalcy.

Thank you!
Helpful - 0
Avatar universal
Hi,i´ve started corticosteroid treatment for suspected AIP.
30mg prednisone for 15 days,then taper off.

I had EUS which showed signs of chronic pancreatitis.
Had also MRI,Abdominal ultrasound which came back normal.
Extensive bloodwork showed everything normal,including IGG levels,only ALT and AST levels slightly high.

I have pain in my pancreas and lower back and also upper abdomen,it´s been like this for 4 months and lost 5 kilos.

Just wandering if any of you could tell how long until you start noticing signs of getting better with prednisone?
I started it 2 days ago and haven´t felt much difference.

Getting quite desperate,thanks for your input!
Helpful - 0
1 Comments
II am 3 years on imuran.
I have had no serious side effects. My hair did fall out some, but was happy to see it grow back curly.
Avatar universal
I honestly do not know the specifics on her diagnosis. She was initially told cancer or precancer (IPMN) either way pancreas would need to be removed by a specialist in Toronto. She was sent to another doc who specializes in EUS, who after performing the procedure, biopsies, blood work, told her officially she was AIP not cancer. This was one month ago. She has been on prednisone for 1 month, and while better, still awakens with pretty severe cramps in the middle of the night, and depending on what she eats it can last all day long.

She had a routine colonoscopy done, which was what triggered the AIP (they say its not related, but she claims the pain began for her the minute she woke up from that procedure)
Helpful - 0
Avatar universal
Sorry for asking, but how is Your mom was diagnosed with AIP?
Is She IgG4 positive/negative?
Is She ANA positive/negative?
What is the level of She amilaze/lipase?
Helpful - 0
Avatar universal
My mom was diagnosed with AIP in July. Bouts of recurrent cramps since april. After a referral to a pancreatic surgeon and ultimately EUS done by another specialist, and I would asume all related tests, it came back AIP.  Prednisone 40mg/day for the past 4 weeks hasnt exactly slowed the symptoms. The pain is mostly from eating the wrong foods, prescription enzymes help.  Not sure when the pancreas will begin to release its own digestive enzymes again, I guess swelling/cycsts tend to block the duct in AIP.
Helpful - 0
Avatar universal
hi, my son had belly pain during 2 weeks, after 2 docters, 2 nights on emergency where they told us he had an obstruction and gave him a fleet,
his eys became yellow so we had his blood tested, his livertest where verry bad, my oncle who's a retired docter sent us to an gastroentrologist, he had an echo and an mri scan and he saw something he had never seen before on a kid, so he sent us to the universal hospital of Leuven, there he was diagnoses aip, he's on imuran now, the pancreas is oke but the side effects are terrible.  He now has pain in his joints, musceles, as he plays footbal at high level he's injures every to weeks, he has not a lot of energy.  the doctors say he has to stay on imuran for at least 3 years. how is your son doing?
Helpful - 0
Avatar universal
Hi, my son is 8 and been having pancreas issues for the past 4 months; although the docs can't determine if he has AIP or inflammation of pancreas, they have put him on prednisone.  He's in week 3 of taking the meds, so far his side effects are what's expected for taking steroids.  How did they finally diagnosed your son with AIP?  
Helpful - 0
Avatar universal
Hello m'y son, 10 years old was diagnosed aip 3 months ago, he was on medrol for 2 months ans started immuran a month ago,   He's doing wel but recently he has problems with his joints, legs and arms.  Has anyone the same side effects and do anyone know other kids diagnosed with API?
Helpful - 0
Avatar universal
I asked You that because AIP is EXTREMELY RARE disease!
In my case, which began a year ago, constantly elevated amylases, lipase and IgG4, I still have no diagnosis of AIP.
Actually, as I stated above, my amylase, lipase and IgG4 are ALWAYS elevated, but all of my imagining findings ( CT, MRCP and MRI pancreasa ) are PERFECT! Only EUS finding, which I did in April of this year, showed the presence of very mild chronic pancreatitis ( 2 minor criteria of 9 - hyperechoic foci and hyperechoic MPD wall )
Because of all this, my GI doc haven't yet gave me prednisone therapy.
Helpful - 0
Avatar universal
Mayo Clinic physicians wrote a letter to the editor of one of the GI journals.  They were stating that since Imurin damages the small pancreatic blood vessels that in the long run  it was probably not a good choice.  This was around Dec 2010.   At that time the other choice was prednisone.  
Helpful - 0
Avatar universal
The upper end of the range for the two tests I took is 85.
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Avatar universal
First of all, I would like to thanks for your reply!
You wrote to me that Your IgG4 was 203 fifteen months ago, and now is 149. My next question is: What is reference range of Your IgG4? Actually, I asked for that because reference range is different from lab to lab.
Thanks, in advance, for Your answer!
P.S.
I'll explain later why I asked You all to.
Helpful - 0
Avatar universal
Hi! 15 months ago my igg4 level was 203. Last week it was 149. My rheumatologist would like me to try rituxan which makes me a bit nervous due to its side effects. Thanks for your input!
Helpful - 0
Avatar universal
Hi,
Can You tell me what was Your IgG4 levels?
Helpful - 0
Avatar universal
I go to a rheumatologist for my AIP. He was the one who diagnosed it. My treatment has been like everyones...40mg prednisone tapering and Imuran daily. I was diagnosed in April and am feeling pretty good. My IgG4 levels are still high though. I see the Doc every three months and am due again in December for more tests.

Hope you can find a good rheumatologist to get you thru this.
Helpful - 0
Avatar universal
Hi all! I'm looking for some advice. :) I was diagnosed with RA in March of last year. In July I had severe upper abdominal pain that landed me in the hospital. I was admitted because my amalyse and lipase levels were elevated. A test was done that determined my gallbladder was not properly functioning so it was removed. That was thought to be the end of my troubles. Almost exactly one month later, I had the same problems, severe abdominal pain and elevated pancreatic enzyme levels. Around this time I had my igg4 levels tested and the results were that my levels were very high. Although my leveles were high, my doctors wanted to rule out other more common diseases prior to putting me on prednisone. In the spring of this year, I was put on a Prednisone taper. I started and 40mg per day and have went down as low as 5 with adjustments made throughout the taper. However, my symptoms of severe abdominal pain have never subsided. I am now experiencing abdominal pain, while not as severe as it was initially, quite a few times a week. I suggested trying Imuran as I've read from some of you that imuran has worked. My gastroentronolgist put me back up to 20mg of prednisone and told me to discuss the imuran with my rheumatologist. While I like both of my doctors and I have confidence in them, I'm beginning to get frustrated. I'm also beginning to get confused on who is treating what. What speciality do your doctors work in? Are there doctors who specialize in ra and AIP? How long until your AIP was under control? Thanks in advance for any advice you can offer.
Helpful - 0
902019 tn?1249861414
The symptoms could be due to a multitude of things. Hopefully you'll know more after the CT scan.
Helpful - 0
Avatar universal
who knows, what?  since may. to date  my wife has lost 23 pds. she is constantly nauseous, doesn"t feel like eating, doesn't throew up if sshe eats something, has had a colonoscpy and an end oscopy has mucus in the stomach, is on protonix twice a day no othe symptons... blood can back good ,ultasonic test seemed to be good, exersize three time a week, dosen't care to eat aneven when she does its not a large quantitiy and is losing weight.....after this paoting we are going for a cat sacn.... any sugestions/comments,,,thanks sida=kat...
Helpful - 0
Avatar universal
I was diagnosed with AIP in April. My doc put me on the pred and Imuran at the same time saying that it takes awhile for the Imuran to kick in. So far I have not had any problem with the Imuran. I did suffer from pred withdrawal even though I reduced from 40mg by 5 mg every 10 days. That was no fun!
Helpful - 0
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