Autoimmune Pancreatitis

[cudagirl]

I have been searching on the net for information about Autoimmune Pancreatitis.  I was diagnosed with this disease in July of 2007.  My doctors were sure I had cancer because I had a mass the size of a golf ball on the tail of my pancreas.  I also have masses in my kidneys.  I was very relieved to find out it was NOT cancer, but an autoimmune respose to something.  My question is.....has anyone else in this community been told they have this, and did the treatment work for you.  I have been on a huge round of steriods since the summer,  I am afraid of the side effects, and want to go off of them.  My doctors won't let me, so I am just looking for some advice and maybe a natural treatment for it.  Thanks.

[leslie806]

I am currently waiting on a diagnosis.  I'm hoping for AIP instead of cancer!  Did he have the high fevers before the whipple?  I've done lots of research and haven't heard of many people experiencing fever with AIP.  I had an endoscopic ultrasound on Thursday, and did experience a high fever for the first time in my adult life.  It was horrible.  I wondered if it was from my insides being poked and prodded, or the pancreas reacting to the biopsy that was done as well.  I am hoping the fevers don't come often.  Does your dad feel okay after the fever breaks?

[ivory63]

My dad was diagnosed with autoimmune pancreatitis after being told he had pancreatic cancer and undergoing a whipple.  He has had nothing but problems and suffers from sporatic high fevers, as high as 104 degrees.  He has since started on steroids and was feeling great.  This past week he has had high fevers again, losing weight and feeling horrible.  Has anyone else suffered with the high fevers.  He has been seeing a liver specialist in Boston but I think he is learning along with my dad.  Any comments would be appreciated.  I think he is at the end of his rope and it makes me so sad.

[cudagirl]

Thank you for your reply.  Your information was helpful  I am going to ask my dr about Imuran. What kind of drug is that? I am taking 400 mg of Plaquinel and they did have me on Methotrexate, but it was irritating my liver so they stopped it.  I am scared that on my visit on Monday to the dr he is going to up my dose of prednisone.  I have not been feeling very well the last few days.  I hate that drug, but it will save my life.......I hope. I am on 25mg now. There is not much information about AIP.  They say it is pretty rare.  Leave it to me to have something unheard of....What a trip....LOL.  Again thank you.

[9743km]

I do not have autoimmune pancreatitis, but I do have autoimmune hepatitis.  Which is basically the same disease but mine attacks the liver and yours attacks the pancreas.  Don't worry so much about the side effects of the sterroids, compared to what the disease can do to you if untreated.  I've been on sterroids since March, 07 when I was diagnosed.  Though I have been "weened" down on the sterroids I am still on them.  I know someone that has had my disease for 30 years (since she was 12) and has been up and down on sterroids, she is 42 now. My suggestion would be to continue through the process, make sure you are taking a ton of calcium a day, eat healthy, and whether the sterroids.  As long as you feel confident and good about your Dr.  Just trust he knows best...Does he have you on imuran or a 6 MP drug as well?  These are drugs that should help them ween you off the sterroids.  They don't have as many bad side effects.

Good Luck...I know its tough!