Re: am i worrying needlessly?

[Guest guest]

I think most of you know my recent story. I was taken off meds (was taking

only 2.5 mg of prednisone and 100 mg of imuran) for AIH in July 2004 based on

the Mayo Clinic pathologist reading the same biopsy slides from Dec 2002,

which were read by a pathologist in Birmingham, AL and a hepatologist at

Vanderbilt University Medical Center. Both the original pathologist in

Birmingham and the hepatologist at Vandy agreed that I definitely have AIH.

The Mayo path wrote about 2 lines saying she didn't see signs of AIH and only

saw damage consistent with repeat attacks of acute pancreatitis. Mayo's

standard for treatment of AIH is to stop the meds for AIH after about 12-18

months and then just monitor the liver enzymes.

So, even though my local GI/hep had told me that he would keep me on Imuran

for the rest of my life, he went along with the Mayo hep and stopped the

imuran and prednisone in July 2004. My liver enzymes stayed normal or near

normal until November 2004. the ALT and AST were around 200 in Nov 04. On

Dec 10th, I was admitted to the hospital near my daughter's home because of a

pancreatitis attack. My AST was 1210, ALT was 585, Alk Phos was about 195.

Pretty much everything else that goes along with a liver not functioning as

well as it should was at least slightly out of whack. Hemoglobin, Hematocrit,

Total Protein, Albumin were all lower than normal. Oh, also, an ultrasound

revealed my liver was enlarged, which as far as I know, it has never been

enlarged before.

At least we now know that I DO have AIH! I was put on 60 mg of prednisone for

the first three days in the hospital and then decreased to 20 mg a day and

sent home on 20 mg prednisone a day. Liver enzymes were down to about 200

when I was discharged on Dec 14th. I saw my local GI/Hepatologist on Dec

16th. Labs on that day revealed an AST in the normal range and ALT of 89. On

Monday, Dec 20th, my GI's nurse called and told me I could drop the prednisone

to just 10 mg a day and then see him again on Dec 30th.

I had a pancreatitis attack late Christmas night - well really early the day

after Christmas since it was 3 a.m. when we got to the E.R. Both the AST and

ALT were back up over 200 on Sunday morning. I don't know what they were on

Monday, but my pcp just told me they were still significantly elevated. They

didn't draw any blood on Tuesday or Wednesday, so I don't know where my liver

enzymes are at this point.

Currently, they have me on just 10 mg of prednisone for the AIH. I had to

begin taking oral meds for my type 2 diabetes (caused by chronic pancreatitis)

less than a week after going back on prednisone. I definitely do NOT want

them to up my prednisone. However, I am a little attached to my liver! I

would really like for my GI/Hep to leave the prednisone at 10 mg daily and go

ahead and put me back on Imuran. I'd like to taper the prednisone and get

completely off of it as soon as it is safe for my liver.

Even before the AIH definitely relapsed, my husband and I both felt

uncomfortable about simply stopping the meds for AIH without doing another

liver biopsy to see if the damage to my liver has decreased, increased, or

remained the same.

So, all of that for my question to you guys. Am I being silly for worrying so

much? I don't relish the idea of another liver biopsy but I also don't like

not knowing where we really stand with the level of damage to my liver.

I'm just looking for personal opinions on this. I'm going to talk to my

GI/Hep tomorrow about all this, but I just wanted to know how those of you who

have been where I am at and whether you think another liver biopsy is

warranted or if I should just leave well enough alone.

thanks,

W

[Guest guest]

,

I am absolutely terrified of relapsing if I go off all

my meds. and I would not think twice about having

another liver biopsy done to assess the state of my

liver before the drugs are stopped. I would say, go

for it. Just my opinion of course. Good luck!

Kathy

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