Re: old member returning with interesting news from Mayo clinic

[Guest guest]

Welcome back ! Often, I had wondered how the wedding

went. That is so awesome! Since you left, my daughter gave us a

beautiful baby girl and now we are grandparents and we are in love with the

baby! Oh well…

But what is this 'prominent ampulla'

that you speak of? And, are you sure that the pancreatic wasn’t

caused by the Imuran? Just curious. Anyway, at times I had problems

with pain, (just had a problem yesterday…the first in over a year) and

they thought it was pancreatitis, but the tests all came back negative…just

left me with the pain! I hope they can help you out with this prominent ampulla

thing.

As for the biopsy, were the doctors looking at the original biopsy slides?

Just curious, because my second biopsy came back and it showed that the liver

really didn’t have AIH, but that it just wasn’t right. I

figured it was because the liver was healing itself from the meds. You

are so lucky to get off the meds…good luck!

Debby

[ ] old

member returning with interesting news from Mayo clinic

Hello all,

I am an old member who had to leave for a while back

in April or May. Life has been quite busy since I left. Some good, some bad.

My daughter, Nikki, got married the end of May and

the wedding was beautiful. She and have now been happily married for

almost two months and all is wonderful with them, despite the fact that they

are very busy with school and work. They are so incredibly happy and that

really does my heart good. To make the wedding even more interesting, my 20

year old stepdaughter, 's, boyfriend of 3 years asked her to marry him

and gave her a beautiful engagement ring only minutes before Nikki walked down

the aisle for her wedding. Now May 29, 2004 will be an incredibly special day for

both our girls! and Luke also plan a long engagement, so that is good!

Nikki and were engaged for 2 1/2 years.

As those of you who remember me know, I was diagnosed

with AIH in Jan 03 following a liver biopsy in Dec 02. I quickly responded

to treatment with 20 mg of prednisone and within 2 1/2 weeks, my liver enzymes

were near normal after several months of ranging from normal once or twice to

nearly 800. I was weaned down to only 2 1/2 mg of prednisone daily by Sep

03 and began Imuran 100 mg around Aug 03. My liver biopsy was initially

read by a pathologist in Birmingham, AL and seemed to be a clear cut case of

AIH with what I thought was stage 3 fibrosis. When I responded so well to

the prednisone, my docs were only further convinced that it was AIH. In

addition to the AIH, I have systemic lupus, diagnosed in 96, and I had been

having attacks of acute pancreatitis since Jan 00. I went to Vanderbilt

University Medical Center in Apr 03 to see a hepatologist because my GI at the

time told me that my continuing pain, nausea, and vomiting was from the AIH and

not pancreatitis. I saw a hepatologist there. He read the liver

biopsy slides from Dec 02 and agreed with the AIH diagnosis. He did not

agree that the pain, nausea, and vomiting were caused by the AIH. He

believed there was a problem with my biliary system and/or pancreas. In

June 03, I was put under the care of a new GI/hepatologist who specializes in

liver and pancreas problems. He also agreed with the hep at Vandy and

said I have AIH and chronic pancreatitis. Things have been up and down as

they typically are in someone with chronic illnesses.

My rheumatologist wanted me to go to the Mayo Clinic

to be evaluated by a new team of doctors just to see if anything could be done

to help me.

I had my visit to Mayo Clinic in Rochester the last

week of June. It was not all that productive in my opinion, but a ct scan there

did reveal a 'prominent ampulla' in the words of the radiologist on the report.

The GI doc there said there appeared to be either a tumor or some partial

blockage at the ampulla of vater. He convinced me to let them do an ERCP, which

was a MAJOR mistake. Despite 400 mg of demorol and 17 mg of versed, I was awake

until the very end of the ERCP. It was by far the worst experience of my life.

I was literally screaming (the best I could with a tube down my throat) the

entire time. The ERCP apparently took much longer than normal because the

equipment failed once and they had to start over and also because I've had a

gastric bypass and my intestines have been re-routed. It was essentially a

waste because they could not get to the area of the ampulla of vater or my

pancreas because of the gastric bypass. The GI doc at Mayo said the area around

the ampulla of vater was actually slightly visible on the last ct scan I'd had

at home a few months back, but was definitely increased on the one done at

Mayo. I really haven't gotten any definitive answers as to whether or not

anything can or should be done about this 'prominent ampulla'. The findings

were consistent with my local GI/hepatologist's suspicion that my cp was

somehow caused by a disruption in the flow of bile.

However, the most interesting thing about the Mayo

visit was that the pathologist at Mayo said she saw no signs of AIH

on my liver biopsy slides, despite the fact that she was looking at the

same liver biopsy slides that had been read by the initial path in B'ham, as

well as the Hep at Vandy. The Mayo pathologist said the

damage to my liver looked more consistent with damage caused by recurrent

attacks of acute panc. I showed the Hep at Mayo the original liver

biopsy report. He said it was like he was reading reports on two totally

different biopsies! He said that the original report actually indicated

the beginnings of mild cirrhosis/stage 4 damage to my liver, where the

Mayo pathologist's opinion was that there was only stage 1

fibrosis! The Hepatologist at Mayo said that the

doctors their do not believe that a person with AIH has to be kept on meds

for life and their normal routine is to take the patient off the meds after a

year and see how they do. He said that since there is now some question

as to whether or not I even have AIH, he would recommend we stop my meds for

the AIH (imuran and prednisone), especially since both are known to cause

attacks of acute panc.

My GI/hep at home said he didn't see any harm in

stopping the imuran and prednisone and just watching my liver enzymes to see

what happens. This is despite the fact that he had told me I would be on

imuran for the rest of my life. I've been off Imuran and prednisone

for 3 weeks and they are just watching my liver enzymes closely. The

first time my liver enzymes were checked 2 weeks after stopping the

imuran/prednisone, my enzymes were up to almost 3 times normal. My alk

phos was also higher than it had been since going on the meds. However,

the labs I've had since then, my liver enzymes and alk phos have been a little

closer to normal. I've already had one flare up of pancreatitis in

the month since I got back from Mayo and just got out of the hospital

yesterday, so it seems that the imuran and prednisone were not responsible for

the continuing flare ups of pancreatitis. It seems that the

likely answer for the pancreatitis is the 'prominent ampulla', which finally

became evident on the ct scan. My GI/hepatologist basically gave me a non

answer on what could/should be done regarding the 'prominent ampulla' and told

me he wanted to first address the AIH and the trial of stopping the meds for

it.

Anyway, I am a little apprehensive about stopping the

imuran even though my GI/hep will check my liver enzymes every two weeks for a

while. If the first pathologist and the doctor at Vandy were correct, the

AIH was progressing rather rapidly without meds. I'm a little afraid that

the damage may once again began progressing without the imuran. I'm

trying to not think about it and try to tell myself that if the AIH is there,

my liver enzymes will eventually elevate to the point that there is no question

about whether or not I have AIH.

Has anyone ever had a situation like this? If

I'd had a new liver biopsy, it might make more sense, but I'm confused as to

how 3 doctors could read the exact same liver biopsy and 1 sees things so

totally different.

Sorry to go so long without being in touch. I just

can't seem to really get my strength and energy back. I was in the hospital 3

times in June and then spent a week at the Mayo clinic. My hemoglobin,

hematocrit, and some other blood counts are staying low so I'm sure that's

partially why I am so friggin' tired!

I hope this finds everyone doing well!

W

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[Guest guest]

Welcome back . So glad to hear all went well

with the wedding! I really missed hearing all about

it. Reading all about your last few months, it really

makes you wonder about this disease of AIH and why

treatments and approaches to the disease vary so much

from doc. to doc. Keep us informed of what is

happening. Again, welcome back!

Kathy

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[Guest guest]

Hi ,

Nice to see you back.

The pathologist who read my biopsy stated I had AIH but there was no

indication of PBC. When it was read again at the Lahey Clinic, a

pathologist and a hepatologist both found 5 markers for PBC, which

by that time had gone a full year without proper treatment. So,

sadly, they do make mistakes.

I'll never have another one unless it's going to be read by more

than one doctor.

Sandy C.

[Guest guest]

Debby,

Congrats on the new grandbaby! There is no greater blessing in life than a child! What is her name? Enjoy! Nikki and plan to begin working on a family in about 2 years. They want her to be through having babies before she turns 30 because of her rheumatoid arthritis and the autoimmune clotting disorder (antiphospholipid syndrome), which can cause miscarriage by causing blood clots in the umbilical cord and placenta. She's 22 now, so by the time she's 25, I'll probably have my first grandbaby, God willing.

I'm about 99.9% sure that the pancreatitis has nothing to do with the imuran or the prednisone, which can also cause pancreatitis, since I had my first attack of pancreatitis back in Jan 2000, 3 years prior to being diagnosed with AIH and being put on prednisone and over 3 1/2 years prior to being put on imuran in Aug 03. My current GI/hep (since June 2003) has felt all along that the pancreatitis is the result of a disruption in the flow of the bile, so the 'prominent ampulla' definitely makes sense. The questions, in my mind, are

1. is the 'prominent ampulla' or in other words, some sort of enlargement or growth at the ampulla of vater, which is where the pancreatitic duct and common bile duct meet, a result of scar tissue from all the repeated attacks of pancreatitis or is it a tumor of sorts? I'm not real worried that it is a malignant tumor at this time. However, if it is a tumor, there is the possibility that in time, it could become malignant.

2. If it is a tumor, can't I just have surgery to remove it and maybe never have another attack of pancreatitis? However, even if there is a tumor causing the problems, removing it might not totally eliminate my pancreas problems because every attack causes some damage to the pancreas. But, surely removing it might make things better!

3. If it is scar tissue from repeated attacks of pancreatitis, might removing the scar tissue improve things at least a bit?

As for the liver biopsy - yes the pathologist at Mayo was looking at the exact same liver biopsy slides reviewed by the original pathologist in Birmingham, AL and by the hepatologist at Vanderbilt Medical Center in Nashville, TN. I've only had one liver biopsy and it was done Dec 27, 2002. I was told on Jan 6, 2003 that I have 'autoimmune liver disease'. The GI never said autoimmune hepatitis. It was when I read the biopsy that it said autoimmune hepatitis. As you know, often people hear hepatitis and they think viral and contagious!

The whole liver thing is puzzling! I'm thankful to be off the imuran and prednisone, although I was only on 2.5 mg of prednisone, so I don't think I was having any side effects from it. However, as I said in my other post, I am a little apprehensive about the possibility of the liver damage progressing without a lot of outward signs until it is too late. I'm trying to not think about it too much and just have faith that my liver enzymes will elevate if I need to be back on the imuran.

thanks to all for the warm welcome backs!