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Old 07-20-2012, 01:27 AM   #1
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Auto-Immune Pancreatitis

Hi,
does any1 know much about AI pancreatitis.
I had an EUS yesterday and was told my pancreas wasnt normal looking. some of the ducts were thickened and damaged.
I also have ulcerative colitis and whilst being treated for it with steroids i started to get better with the AI pancreatitis.
I also had a blood test for IgG4 levels.

There doesnt seem to me much about it online apart from its hard to distinguish it from pancreatic cancer.

Any1 know anything about it or a link to some info.
There is only 3 other cases of it in my country so im being shipped to the capital for more tests.

Dunno if they're trying to rule out cancer or just trying to diagnose me.

Ju

 
Old 07-20-2012, 03:31 AM   #2
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Re: Auto-Immune Pancreatitis

I know a little about it but do not have it. It behaves much like regular pancreatitis but the cause of it is auto-antibodies against your own pancreatic tissue. It will tend to have remissions and exaccerbations like the ulcerative colitis does. Many people with autoimmune disease have more than one, so it is not surprising, given the UC. Do you know what made them think it is autoimmune? One item I would ask for if you aren't already getting it, is an H2 blocker like ranitidine (Zantac) and/or a PPI (like Nexium or Protonix) to reduce acidity in the stomach, as stomach acid stimulates the pancreas to secrete its enzymes and juices and can make the pain worse when it is flaring up. Also, there is a link between hyperparathyroidism and pancreatitis, so running a parathyroid hormone level on the blood might be a good idea to rule out that, especially if your calcium is on high side. PTH "steals" calcium from your bones and raises your blood calcium and can cause osteoporosis. The ranitidine is OTC in US, and probably in Ireland as well. Good luck. Cancer appears differently on US than inflammation, so I doubt that is a concern.

 
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Old 07-20-2012, 03:58 AM   #3
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Re: Auto-Immune Pancreatitis

thank you ladybug for your speedy reply.
what made them think its autoimmune is how it improved as soon as i started steroids. ai pancreatitis is the only pancreatitis that responds to steroids? no? got alot to think about now.
i have a ppi here ulcid or omeprazole? is that ok.
do you know is it treated the same as pancreatitis? ie low fat diet and no alcohol or does it matter what i do now?
ju

 
Old 07-20-2012, 06:53 AM   #4
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Re: Auto-Immune Pancreatitis

Steroids are not usually used for other types of pancreatitis. They may want you to be on steroids whenever it flares up, then taper off so you aren't on them long term. It would be interesting to see if the pancreas flares at the same time as colitis. The idea with pancreatitis is not to stimulate the gastric acid secretion when it is acting up, so you're right, no alcohol, low fat, and low acidity foods (vinegar, salad dressings, tomato sauces, citrus,) and spicy hot foods and caffeine. If it gets really bad, a clear liquid diet may be necessary for a few days. I would check with your Dr about the meds I mentioned, but think they would help. Finding out what your amylase and lipase levels are with flares will help you know when an attack is mild, mod, or severe and will help guide you with what to do and what to expect.

 
Old 07-20-2012, 07:58 AM   #5
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Re: Auto-Immune Pancreatitis

yeah thanks again for taking time out to write back.
im on an 8wk course of steroids for UC that isnt helping my uc but is keeping the pancreatic pain away. Im in an almighty flare right now going up to 14 times a day to toilet. doctors having me decide between remicade and humira for it because its not responding to any other meds. anyway thats another story.
Ju

 
Old 07-20-2012, 11:18 AM   #6
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Re: Auto-Immune Pancreatitis

So sorry that's happening. I hope whatever med you try next works wonders. That's a nasty disease for anyone to put up with. We have it running in our family genes, and my 29 year old daughter just had a bout of colitis that was termed "non-specific", so I was pretty worried about her. It has resolved, but I fear it may rear it's ugly head again sometime. I feel lucky not to have it along with my lupus and RA. You'd think our immune systems would recognize who we are and realize we are not the enemy! Hope you feel much better soon!

 
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Old 07-20-2012, 10:02 PM   #7
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Re: Auto-Immune Pancreatitis

so very true. hope your daughter happens to avoid any sort of AI disease. My greatest fear is passing it on.

Ju

 
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