Re: am i worrying needlessly?/

[Guest guest]

Just my experience with Kelsey and her CAH...

She was kept on the Prednisone until her levels became within normal

for a person with CAH. I beleive her ALT and AST had to be 50 or

less, her Bilr Total had to be 17 or less....then he tapered her off

the Prednisone. She began Imuran on her third day of Prednisone.

Being ur levels have shot up again, it will be a process of being

tapered off the Prednisone while adding the Imuran. I know it sucks

having to start again with the meds and all. Hang in there, and no U

never worry too much about ur health especially after all U have been

thru.

Hugs

Trish

> 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