Has anyone out there been diagnosed with autoimmune pancreatitis? What are your docs telling you? I have had chronic pancreatitis for over 10 years now and research has finally come up with a cause (other than post-op problems and alcoholism) for it. I want to hear your story.
Major life change and pain in the butt.
I'm only 49 and had Whipple's surgery last May. 08 I'v been through hell qand back trying to get some kind of regularity and some quality of life back with this disease.
Trying some new meds again along with pred. again, see if this helps any.
Major problem still: throwing up, and chronic pain, pancreas area.
Any insight useful, thanks Bruce
They thought I had cancer,though I;m just 44.Whipple was a mistake/unecessary.I,m assuming you elected to have it for pain issues? I'm now worried about the part of my pancreas which is left.Did you have the type with GELS (granulocytes in the path report)or the more common type.Common is a funny word,we both know this is rare.I'm scared.Are you on pancreas supplements? How does your GI Dr. know when to treat you? Does he do imaging regularly? Does your amylase go up when you have attacks? I wish I could help,but I,m new to this and also worried about quality of life now and ongoing.Do you have IGG4 in your bloodwork? Mine didn't give off much IGG4-probably why they misdiagnosed me.I should have gone out to Mayo clinic,but..now I have to try and go on.
I think my 20 year old son has the above there is no other reason for his pancreatic flare ups. my two other children have autoimmune thryoid and diabetes getting a diagnoses has been a nightmare anyone know of a connection between these diseases?
I have been diagnosed w/both, Autoimmune Pancreatitis & Celiac Dx. There is absolutely NO mistaking differentiation of the two! Celiac Dx causes general, acute discomfort. Pancreatitis causes unmistakable, chronic PAIN.
I see from your posts that you say you had pancreatitis, induced, no doubt, from the multiple, strong meds you were taking. You then had Acute Pancreatitis. AIP pts cannot change the path of their dx through cessation of meds or a simple diet change. Put simply- Celiac Dx is an imposition in one's lifestyle that can readily be remedied, w/the exception of a few, extremely rare cases. AIP & Chronic Pancreatitis are life-long sentences for pts to manage not only large amounts of pain, but are subjected to ongoing pancreatic damage. I am now in the beg. stages of Diabetes, as a result, in add'n to the Auto-Immune Dx that began this state of my health in the first place.
As an RN for 16+ years, I would kindly suggest to you, as it appears from your photo that you are in health care, not implying diagnoses to patients, particularly if you do not suffer from that dx yourself (in this case, AIP), even if your intentions are good. Remember, if you are truly a health care provider, your first duty is "to do no harm." Perhaps concentrating on healing your own ailments first would be best.
Could you explain more about the difference between chronic pancreatitis pain and celiac pain?
I have had pain off and on for a long time, but cannot get a diagnosis for either. All tests are normal (MRI, CAT, blood work). The only abnormal test was elastaze, which was low and then went from 135 to <15 after I had a bad reaction to endoscopy.
I then went gluten free for 6 weeks and elastase was up to 285. I have no idea if this was pure coincidence or related.
I need to see the specialist to discuss. He suspects autoimmune chronic pancreatitis but that was before the normal elastase result.....
Hi, ive never had celiac pain but i do have pancreatic pain. my belly swells up like i have bad trapped wind and it feels like indigestion only lower down. as the day progresses it'll spread around to the back and will be very hard trying to get comfortable in any position.
i too had loads of tests that looked normal until i had an endoscopic ultrasound last week. my pancreas was swollen and misshapen and some of the ducts looked damaged. my pain went away as soon as i started steroids. autoimmune pancreatitis is the only pancreatitis that responds to steroid treatment. just some thoughts for you as there isnt much info out there.
I am glad to hear that things improved quickly for you and thanks for the info.
I have been offered an EUS, but I am scared as it took me two months to recover from the first endoscopy. As an alternative I have also been offered a trial on prednisone to see if symptoms resolve, but again that has many side affects. I am deciding what to do - EUS, Pred or nothing.
I also wonder if I have Celiac or GS rather than pancreatitis, as I had some funny reactions to wheat (very sleepy, pain) after my endoscopy but then I felt so bad not sure what is coincidence .... again negative blood tests
hmmmm. theres no way of ruling out the pancreas until you have an eus. what other symptoms have you apart from pain. describe the pain you experience. celiac can be ruled out with a simple blood test? no?
what made the specialist suspect AIP when all you're tests are inconclusive?
My pain is from my right hip bone to the bottom of my right rib cage and comes on after eating. Also at times I have pain below my left ribs. Pain levels decrease if I do not eat fat.
Also when really bad I have been short of breath, chesty cough, frequent urination (I know weird). I have asthma and have slight hypothyroidism. No calcification at all on the scans. Not sure why he thinks AIP, but he says he has ruled out all other causes from scans and blood tests.
My understanding is elastase is something that can be measured in your stool that is typically used to measure pancreas function (but the test cannot distinguish with a problem with the pancreas or a problem elsewhere which causes the pancreas not to function as it should). My elastase when very low for a period but has now recovered.
Hope not too late for forum. My wife has AIP and in hospital just now. Has been getting treatment since Sept 2009 for it after being diagnosed with Cancer (wrongly) Been through hell like everyone else by the sound of it but the worst thing is she is continually in and out of accident and emergency with them making her comfortable and then sending her home. This last one has been the worst. She ended up with a tube down in her stomach to drain off this horrid black stuff and Nil by mouth for 4 days. Hopefully will start eating tomorrow but as usual CT scan all OK. Her CRP level in blood was 146 showing inflammation and her Liver Function test has been abnormal since May2009. Would love to track down an expert in this terrible disease as I hate my local hospital because even to this day it is as if they treat it like Pancreatic Cancer by filling her full of Morphine and Anti Sickness drugs then sending her home. She is now on her second Steroid treatment after first does then 4 months low dose.
August of 2010 a hospital in N.D. dignosed me with Pancreatic cancer and recommended surgery (Whipple) That was on a Saterday and they were going to do Surgery on Monday. I told them I wanted a second opinion and headed for Mayo Clinic in Rochester, Mn. One week later I was told there was no cancer!!!! What I had was AIP autoimmun pancreatats. 2 month regime of prednzone and I feel perfect. Contact Mayo and get second opinion!!!!
Can anyone tell me how easy it is to get an appointment with Mayo Clinic for non US citizens? My 26 year old daugher is currently in hospital in UK for pancreatitis for which they cannot find a cause. They are working on the assumption it could be auto-immune but are still waiting on test results.
Alternatively is there anywhere else in UK or Europe that is considered a centre of excellence in this field.
Any suggestions gratefully received as she has been unwell for some time now with no obvious signs of improvement.
My 28 year old husband (and father of our two toddler daughters) is currently walking the road to diagnosis. I am so sorry for all that so many of you have gone to getting to your diagnosis and yet I find myself reading these messages and PRAY that it is AIP as opposed to cancer for my husband.
My husband went to the hospital with jaundice and was found (during ERCP) to have a stricture of the common bile duct. A stent was placed and then testing began to figure out WHAT was causing the stricture of his bile duct. Immediately after the surgery he got severe pain in his right side that radiated to his back. It went away within a few days. A few weeks later the pain came back and was very worrisome. His amalayse was through the roof and he was diagnosed with pancreatitis. Then an MRCP/MRI showed an enlarged head of the pancreas and the radiologist said there was a mass. Cancer serum markers are all negative, bile duct brush was negative, doctors do not think it is cancer (although we are still awaiting biopsy)and they have started my husband on prednisone to test their hypothesis that he has AIP.
I am praying that he does not have cancer and that if he has AIP predinsone does the trick. Would love to hear from any of you regarding your lifestyle, treatment, journey to diagnosis.
Is AIP chronic? Does it completely go away or will it continue to flare up at different times throughout your life. My wife has eventually started to feel much better but still has some inflammation marker in her stool sample. She has to go for a colonoscopy on Friday as she sometimes passes blood but her AIP has all but gone. Last MRI showed a small pancreas and now has diabetes (struggling to control) just wondering if she is out of the woods or is this condition chronic and it will flare up.
Hi everyone, if you are still around! I have had AIP since 1999 and still alive & kicking! Am well controlled on medication & diet, although in many ways the disease has taken its toll. I am not a doctor but would be happy to answer any questions based upon my experience if it helps!
my best wishes to you all, Sian xx
hi there! if you are still interested in helping, my husband (25) was just diagnosed w AIP and i'd love some tips on diet and what medications work for you. we are gluten free, my struggle is should we give him milk and chicken or go vegetarian. thank you so much! my name is hollie thanks!!
My father (aged 73) was initially diagnosed with cancer, before the doctors realized he has AIP. He has taken a treatment of Prednisolon which ended two weeks ago. But already he has pains again. So he is in bed most of the time. He also has Waldenstroem's macroglobulinemia. I don't know what this means for his condition, except no good of course. In Denmark it has been quite difficult to get help. It is very dissapointing that the Prednisolon has not really helped.
Hi Tulle - my sympathies to your father. After living with AIP for 11 years Ive learnt quite a lot about how the knowledge is developing! Like many people I was diagnosed with pancreatic cancer at first. From what I understand some people respond well to a short course of steroids but others need longer treatment. I have a severe chronic form of AIP and have now been on continuous low dosage of predniolone for almost five years - I also take plaquenil, ursofalk,(these three have changed my life!) ranitidine & immodium. I rarely need painkillers now but was on them for the first 8 years. I also have vitD injections and treatment for osteoporosis (caused by long term steroids!) I have to take pancreatin. I also maintain a strict diet basically of no red meats, no dairy (except a little skimmed milk for calcium), very low fats & no alcohol.
As your father also has WM, it may be worth asking his doctor whether a long term maintain dose of prednisolone would help his symptoms - also I am convinced the ursofalk is vital (at least 1000mg daily) but as far as I know theres no clinical proof it helps and there are no serious effects. Ive been on it 10 years now. But please remember Im not a doctor so I can only suggest this based on my experience as a patient!
Hi, I've had AIP for the last 3 years and finding it very difficult to live with as I'm not getting any information from the medical people at all. Had a 10 week stay in hospital which was hell as couldn't diagnose, had extreme jaundice, stents in bile duct and drains in my liver. Just want as much information as possible to find out what I can do to have a better quality of life? At the moment I am prescribed 75mg azathioprine, fluctuating massive doses of steroids, creon omeprazole. Also have diabetes type 1 with this and am now self administering insulin and have a lot of hypos and hypers. Feel I'm at the end of my tether and very rarely sleep well. Please help!
my daughter who is 18 has been having pancreatic type attacks for 4 yrs and has had so many tests all of which are negative, except for celiac disease which is also auto immune, there is a definite link between CD and pancreatic problems, i just wondered how you cope with this horrible disease and have you ever been screened for CD? the docs have just repeated the EUS and have found a slightly imflamed pancreas with some degree of scarring.
im so deperately worried about her, if you have any advice or diet tips i would be eternally gratefull - thanks in advance - jannine
In my case my pancreas is approx 95% burnt out now so I dont get pancreatic pain anymore - the good news is that the little bit that still works is the bit that secreates insulin so Im not diabetic! Diet for me has been vital - cant stress that enough & would suggest its the same for any type of pancreatic disease. But saying that so is a good balance of vitamins etc - its really important not to let yourself get run down. I found that certain foods used to trigger an attack - in my case dairy, eggs were the worse but it is trial & error. Also learning to be kind to yourself, without sounding too 'new age' I learned how to live with the disease rather than fight it so I read up loads on healthy diets/lifestyles etc. Early on I found Urso a life saver - I think its usually prescribed for liver disease but its a 'safe' drug so it might be worth a try but you must take over 1000mg a day for it to have any effect. Ask your doc what he thinks. One thing I would mention is to ask for the docs to keep an eye on stuff like vitamin D deficiency & bone density - if there is mal-absorption with the pancreatic disease this could prevent longer term problems (I now have osteoporosis & chronic vit D deficiency cos it wasnt monitored in the early days) Oh and lots of rest (chronic fatigue is a symptom). Does any of that help? Hope so! Sian xxx
Hi I'm a 47 year man. Healthy, run 25 miles a week, and eat well, not great but better than most. In dec of 2011 I developed abdominal pain radiating to my back. I had elevated lipase (3300) and amylase levels and stayed a week in the hospital with no answers or improvement of pain. Since then i have had a mrcp, 2 ct, 2 endoscopy ultrasounds with biopsies in both cases. First one came back atypical the second was negative for cancers. they are now talking AIP but my ig4 test have been negative but they are still considering a distal pancreatomy finding a marked irregular tail. I am and have been in pain since that dec day. It s now march. Can I ask how long was your high dose of steroid treatment and why was te dose. They have me on 24000 units of creon x3 a day. Not sure why butt I have also loss 25lb. Can I please ask where you were treated and what is ursofalk? Thank you John
Yes, you helped. I'm learning to live with it too.
Some days are tougher than others. I am 47 and feel like I deserve good health because I'm a good person. Well, I don't buy into much new age but I do believe in finding the positive. How do you deal with mal-absorbtion issues like feeling fatigue, nausea, no desire to eat, oily stools and pain?
I am on enzymes, a antihistamine for appetite enhancement and rest. I get depressed sometimes because I had recently been cured and healed from a brain tumor and craniotomy and hcv and my expectation ( yes, i know, that can be a mistake) involved good health.
Hi Everyone. I was diagnosed Sept 09, like many wrongly. wasn't able to work for 12 months, I have recently returned to work only part time that's all I can manage. since returning things just have not improved, can any of you hold down a job and feel normal?. I struggle, tireness, the pain makes it difficult and nobody appears to have answers? feel, like most we are on our own and trying to find answers which are not forth coming.
Can anyone tell me. if they are experiencing the same problems if they get any goverment finanical help during their illness as I have been told not eligable to claim, because they feel my illness is not classed as a disability !!!
Hi all. My story may help someone out there, but I think with this disease... It is rare(ly diagnosed), they don't know much about it, and each case is different. I was diagnosed with AIP and confirmed at Mayo Clinic in Rochester this week. As they might be classified as experts, they have seen 200 cases in 15 years.
My case was more of a rapid onset of symptoms. I had maybe one pancreatic attack in May/June that lasted a couple days. Felt like tightening/dull pain in upper abdomen (almost like I had severe constipation, but did not). Beginning of September, I had sudden onset of fat malabsorption - steatorrhea (bulky, pale, smelly, floating stool), oil in bowel movement. By mid-October, I had lost about 25 pounds before Gastroenterologist put me on pancreatic enzymes (Creon) - after doing an Endoscopic ultrasound and biopsy of pancreas (negative). ct Scans in September, November, and January show my Pancreas enlarged (like a sausage) in November and then atrophying afterwards. Mayo Clinic says that when fat malabsorption started, I had lost 90% of my pancreatic function already. At this point, they think it has come, done the damage, and is past - No need for prednisone.
Other symptoms: Minor RUQ pain, nothing like chronic pancreatitis or anything. Elevated Lipase in September (but has now dropped to nothing). Slightly elevated liver panels. Bronchitis-like cough / phlegm - This was the strange one. Onset was about 2 weeks after fat malabsorption. Mayo clinic says they have seem similar with AIP patients, but don't know the relation/trigger between AIP & lung infection. No sign of igg4 elevation in blood panels.
Going forward: On pancreatic enzymes for rest of my life (pancreas is, basically, burned out). Avoid high fat meals (no McDonalds). Vitamin (d & A) & Calcium supplements - fat soluble vitamins & associated. Watch out for Jaundice (AIP progression to common bile duct issues - possibility, but Mayo though unlikely at this point) & Diabetes (but glucose levels fine, so insulin production seems to not be affected).
Basically... They (Mayo) don't know what triggers it. Each manifestation is different. And in my case, by the time I had any symptoms that sent me to the doctor, the damage was already done.
Hi photodiver,my sister was told 2010 she has AIP been in hospital eight times ftrst year then went eight months ok now she back in hospital flared up again she has treatment of steroids which dont agree with her do you know any other meds to have instead of steroids .Today went to see her she had steroid injected and had bad reaction almost passed out i am so worried about this thanks for reading this from cc.
Our cases sound similar. By the time I was diagnosed via freezing blood at the Oncologists and sending it to Mayo. They told me it was too late for steroids. Currently I still experience the oily, fatty stools daily and the phlegm producing cough.
I am tired a lot. I look for the things I can do. Today I am confined to bed and at least able to write so, I found you.
Do you experience fatigue?
What do you do when you don't feel like eating?
What do you do for stool issue? I can't spell stetoreaha…see?
I've found a sense of humor comes in handy.
Are you able to go out?
I'm 47 and I really don't want to be like this for the rest of this body's time. Proactive is my style. Perhaps we can find solutions together as sufferers of AIP. thanks for your time. Sincerely, kim/ oneoneone
Hope all are well? I am cassey61's wife, whilst after two years being given six months to live (wrong !! because they thought he had cancer) - finally today after months of uncertainty, (although they did think this after a further six months) they confirmed today that it is indeed AIP (which we knew, 12 months ago) but they have to rule out everything first!!!. Whilst things are still not great, hopes are present(due to no other vital organs being affected. we have come to the conclusion to take each day at a time, that's all you can do, the consitant pain is still an issue.
Hopefully, because its rare research will continue and enhance (let's hope)
We are open to any ideas you have and what is working for you, diet, meds anything - so that we can try. Let's face it if the Consultants are confused who else do we have but knowledge of the patients who are dealing with this every day.
Glad to find this forum. Docs also thought i might have cancer after a pain led me to a "mass" on MRI. Went for second opinion at Hopkins...their CT didn't show a mass, nor did endoscopic ultrasound. But a subsequent MRI 3 months later again showed something mass like. Bloodwork was clean but docs concerned, so I just underwent distal pancreatectomy and spleenectomy...disease had sent fibrous stuff to spleen. Diagnosis of AIP not until full histology done of removed tissue.!! My pain was only moderate to begin with and I'm hopeful that having the affected tissues removed was a smart move. Not sure why AIP wasn't on the table earlier on or why no one thought to try steroid treatment. The whole thing has been confusing and I don't know what to expect now. I wonder how long the disease was active before I had pain, and how quickly it did the damage it did. Not sure if relevant, but was doing low carb diet before this started, and also had vitamin D deficiency. Wish more was known about what triggers AIP so I could prevent another round...only have 80 percent of my pancreas left to work with!
Hi just thought I would tell my story. In Jan 2007, I went to my local hospital with pain around navel and left side I was diagnosed with type 2 diabetes. I still had the pain off and on. By the august I had lost 5 stone, still had pain, and could not take it any more. I was admitted to hospital, i was put on a feeding tube, I spent 6 weeks locally, my consultant who was excellant, thought it was pancatic cancer at first, I had various scans, but the blood results were not right so he reffered me to see Dr G Webster at Universcity College Hospital London. I was in for 2 weeks in UCLH, where i had various CT and MRI Scans then had biopsies taken, finally diagnosed with AIP at the tail of the pancreas. Treatment prenisolne for 6 months. Diagnosed with osteoporosis. Caused by Steriods. Late 2009 relapse of pancreatitus put on steriods, then aysalthyprine, reaction to this put on mycolphenalate methatartil. I have been on morphine since august 2007. Was on Creon from diaognosis till June 201, do not need it any more. Just had a colaeic plexus block, no pain at present.
Hope this helps some one. Chris
UCLH Regional centre for AIP.