Re: ursodiol, PBC, AIH, pancreatitis????

October 23, 2004

I take 300 mg of Ursodiol (brand name is Actigall) twice a day. I take it

because my GI/hep thinks that my chronic pancreatitis is at least partially

caused by my bile not flowing as well as it should. Ursodiol is supposed to

thin the bile and make it flow better.

I noticed that Sandy said she takes the ursodiol because she has PBC and

that her alk phos is always elevated. My alk phos is also always elevated.

Her post has made me wonder if perhaps I actually do have PBC in addition to

the AIH. I wonder if maybe it is PBC that is causing my repeat attacks of

pancreatitis, which have now progressed to chronic pancreatitis with

recurring acute flares. However, I have been tested 3 times for the

antibody that typically goes along with PBC (can't remember now what it is)

and it has been negative. My ANA or anti-nuclear antibody has been positive

almost every time it has been tested since 1995. We do know for sure that I

have a very strong tendency for autoimmune diseases. My sister and I both

received a gene from each parent that can cause autoimmune diseases.

Ironically, neither our mother or our father have been diagnosed with any

autoimmune diseases. However, I have systemic lupus, AIH, antiphospholipid

syndrome (an autoimmune clotting disorder), and an IgG deficiency, which our

hematologist says is caused by the same gene or genes that cause autoimmune

disorders. My sister has sjogren's syndrome, ankylosing spondylitis,

antiphospholipid syndrome, and the IgG deficiency. My 22 year old daughter

has rheumatoid arthritis and the antiphospholipid syndrome. So, with all

the autoimmune diseases my sis, daughter, and I have it wouldn't suprise me

to find out I have one more and must add PBC to the mix!

I was originally diagnosed with AIH in Jan 03 after my one and only liver

biopsy. My liver enzymes had been elevated the majority of the time for

about 10 months prior to the liver biopsy. When I started taking prednisone

my liver enzymes were both around the 500-700 range. After just 2 1/2 weeks

on prednisone, they were near normal. In Apr 03 I went to a hepatologist at

Vanderbilt University in Nashville, TN just to make sure I was on the right

meds, etc. The hepatologist got the liver biopsy slides and reviewed them.

He agreed with the original pathologist. I have AIH with stage 3 fibrosis.

He also felt that I had something going on with my pancreas and/or biliary

tract. My GI at the time kept saying that my attacks of severe abdominal

pain, nausea, and vomiting, which often came with elevated pancreas enzymes,

were caused by the AIH. I ended up having to major attacks of pancreatitis

back to back the end of May/beginning of June 2003 and switched to a new GI

doc that specializes in liver/pancreas problems. He immediately diagnosed

me with chronic pancreatitis in addition to the AIH. He felt my AIH was

fairly well under control with the prednisone since my liver enzymes were

normal or near normal except when I had a flare up of pancreatitis. He

added the ursodiol and pancreas enzyme tablets to my list of meds. By about

August 2003, he had lowered my prednisone down to just 2.5 mg a day and

added 100 mg of imuran to my list of meds. For a while the pancreatitis

improved, but things have been pretty rough since the end of May. My

rheumatologist sent me to the Mayo Clinic in Rochester, MN in June. A

pathologist there reviewed the liver biopsy slides - the same ones reviewed

by the original pathologist and by the hepatologist at Vandy. The Mayo path

said that she saw no signs of AIH and that she saw only stage 1 fibrosis

with damage consistent with repeat attacks of pancreatitis. The Mayo

hepatologist read both the original report and the Mayo pathologist's

report. He said he didn't really know what to make of it. According to

him, the orignial report said I had the beginnings of mild cirrhosis or

stage 4 damage to my liver and the Mayo pathologist's report said just stage

1 damage. He said it was like he was reading reports on two totally

different liver biopsies. He said that regardless of whether I do or don't

have AIH, his recommendation was to stop the Imuran and prednisone since my

liver enzymes were normal or near normal most of the time. He said the

hepatologists at Mayo don't think most people with AIH need to be on

medication for the rest of their lives. He said they normally try to stop

the meds after about a year. So, even though my local GI/Hep had told me I

would have to take Imuran for the rest of my life, he decided to go with the

Mayo Hep and took me off of both Imuran and prednisone in July 2004. My AST

and ALT have remained normal or near normal since that time, but my alk phos

is always at least mildly elevated.

I've had a lot more attacks of pancreatitis since coming off of the imuran

and prednisone, even though both imuran and prednisone can actually cause

acute pancreatitis. I told my GI/Hep that I thought I needed to go back on

the Imuran but he insists that my liver is fine and that I absolutely do not

need to be on Imuran.

Most of the time I am successful at trusting him and believing that the AIH

is in total remission and I don't need the imuran. However, there are

times, like right now, that I can't help but worry that he is wrong. I have

had the doctors be wrong so very many times. I was told I didn't have

lupus, only to find out about a year later that I really do have lupus in

1996. My previous GI insisted for 4 months that my liver was perfectly

healthy and that I didn't need a liver biopsy, even though my AST and ALT

were almost always in the 500-700 range and my internal med doc kept saying

I needed a liver biopsy. Low and behold when my GI finally did the liver

biopsy on Dec 27, 2002, the pathologist report showed AIH and either stage 3

or early stage 4 fibrosis (depending on which doctor reads the report).

Then, that same GI kept insisting that my pancreas was perfectly healthy, it

was my liver causing the horrible pain, elevated pancreas enzymes, etc.

Wrong again! The damage to my pancreas progressed enough to show up on film

and to cause type 2 diabetes - thus the diagnosis of chronic pancreatitis by

my new GI/Hep in June 2003.

Anyway, I've gone off on numerous tangents and have rambled enough. Well,

at least I got it out of my system! I'll just go back to trusting my

doctors for now, anyway!

W

alabama

October 23, 2004

I loved your ramblings.

My experience is very similar about the numerous tests and doctors, but fortunately the my AST , ALT & Alk Phospate are within normal levels. Interestingly all of them seemed to have been normal throughout the process of discovery of the liver cirrhosisand all the other problems. It all started with me breaking out with red blotches all over my body and face and finally was diagnosed with discoid lupus.

If anything I believe the Milk Thistle (4 caps a day) I am taking faithfully with all the other stuff, did as much good as anything else. Also have stopped the 8-10 Ecotrins ( coated aspirin for arthiritis) I used to take, and it was probably a considerable relief to my liver, ( which was biopsied and diagnosed with fatty tissue cirrhosis.)