Re: Thank you so very much for responding

December 7, 2007

I started " itching " last December and believed it was from walking out on my job

I was doing for 13 years. I did not realize I did not feel well - just thought

I got " pissed off " and the minute I left felt totally devestated and distraught.

I cried - didn't sleep - walked the floors all day and night - felt totally like

my world just came to an end. I started itching " WORSE " and just believed it

was " nerves " - in Feb I called my PCP and said I can't stand the itching any

longer - I'm up " ALL NIGHT " and the liver does that thing " at night " and so I

just thought that was my typical upsettment time. She drew my blood and the AST

or ALT (not sure which now) was up to 444. Tops is like 40 on that lab. She

said I'm in trouble and sent me to a GI. THAT appt didn't happen right away -

we have one in town - it took me three months to get to HIM - he said I had to

get a liver biopsy and THAT didn't happen fast either - at this point I am given

NOTHING for

the liver or my symptoms of the itching and told to just use benedryl. On July

17 I had my liver biopsy and the pathology report came back " severe chronic

portal inflammation with piecemeal necrosis and fourth stage cirrhosis. I also

have extensive bridging of fibrosis. No evidence of maliganancy and it's funny

how everyone who saw that report had the same reaction - BUT THERE'S NO

MALIGNANCY - THAT'S GOOOOOOD !!!! People just don't know how to react or not

show any shock and dismay to cause more on someone they care about. So then I

went BACK to the GI who told me about the report THREE WEEKS LATER - - (I went

to the hospital and picked up the path. report) - he reacted with " now you have

to go to an institute or university - pick one ! " Still, no meds despite my

severe itching but said ASK FOR URSO FOR SURE WHEN YOU GO TO BANNER. This

doctor believes I had AIH for 10 years because of a lab result I still had from

1997 where they tested me for

arthritis and my AMA and ANA were elevated. He was upset they never followed

through with that because it might mean I've had this brewing for 10 years and

could be the answer to the advanced stages I'm in. Ok so now it's another 3

months before I get to Banner. This same GI now has all over my records I am

chronic Hep C so when I walked into Banner Dr. Little said that was incorrect

and sort of started all over again. I saw her on October 11th. So you see

things are moving at a very slow pace and I'm full of frustration and upsettment

over that especially with that kind of dianosis from the biopsy. Dr. Little

ordered a colonoscopy, endoscopy and CT scan and that was done on Nov 29th. Dr.

Little assured me the wait did not change anything happening with me at this

point and the plan is to watch for decompensation and catching weaknesses before

they get me first. I go the 13th for the prognosis and results of these tests

done at Banner on the

29th and so that will be exactly one year from the time of my symptoms and now

I'm feeling good and got used to this disease which is not good in MY mind. I

WAS doing all natural foods and juicing but got urso and cholorestyramine for

the itch and now I don't itch anymore. It's made me stop doing all the right

things for my liver and whatever I have left that's healthy. I have autoimmune

hepatitis and I have to say one thing that saved me from all the questions and

answers was a book HARPER suggested and that's by Dr. Palmer -

HEPATITIS AND LIVER DISEASE - you will find answers to all your questions and

information that will take some of the edge off. You'll love Dr. Little - she's

" little " too ! LOL- - she's wonderful. Soooo - that's my story and I have no

prednisone at this point but I'm sure on the 13th it will be suggested because

of the inflammation which I'm sure is causing the cirrhosis. My mother was on

prednisone and I know the

ill effects it causes so I'm not wanting to do that. I'm undecided on my

treatment and will research ALL before making a decision. Banner has obtained

my biopsy so THEY can look and see what THEY think. I feel more confident in

" their " analysis but it's been a LONG LONG year. My family is now doing much

better with the news and my husband and myself (although very clingy to one

another) have relaxed a bit more and gotten used to the idea I may not live very

long. The weepy things have stopped and we are attempting to live a normal life

again. Because of the time frame it's put me on this back burner type of

thinking and because the 13th will start all this emotional stuff up again I'm a

bit anxious.

I'd like to find a more private way to give you my number. You can cetainly

call me anytime. I'm here for you. Let me know how your appt went today Kath.

Hugs.

Dee

[LiverSupport- L] Newbie to the group

Hi everyone. I was just diagnosed with AIH/PBC overlap. I'm 45 and

scared to death. I have an appointment tomorrow with a new

hepatologist to get medications because my other G.I. doctor doesn't

know how to treat me because I'm allergic to prednisone. I'm taking

the URSO for PBC and am having Heartburn from it. Please tell me

I'm not going to die since I can't take the prednisone. My liver

biopsy showed inconclusive (nothing showed up) but my AMA-M2 is

positive and my ALT & AST are elevated. So far ANA and ASMA are

negative. He says I have early AIH & PBC. Jeanette has been a

great help from your group who also belongs to the PBCers. I would

really welcome and appreciate any advice others are using instead of

prednisone, so I can run it by my new doctor.I would also love to

hear other peoples stories regarding diagnosis and living with AIH.

I'm so scared and depressed right now, I feel like my life is almost

over. I guess I just need some conversing with people in my shoes.

How do we mentally deal with this? I'm depressed and just feel like

staying in bed all day. Any help would be much appreciated.

Is there any AIH support groups that meet in Phoenix, AZ? Please

contact me.

Thank you & GOD BLESS,

Kathy/AZ

____________ _________ _________ _________ _________ _________ _

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December 8, 2007

Kathy, I too want to know the results of your visit to Dr. Little. Dee, my

heart goes out to you more than I can say, my sister committed suicide in 1984

and I've never gotten over it.

I also want to say that I had one of those long journeys, visiting

dermatologists, rheumatologists, every doc I could think of, for the itching and

being so sick. Remarkabley, finally, it was a dermatologist, not a

gastroenterologist, despite having had a suggestive liver biopsy, who finally

referred me to the gastro who did another biopsy and came up with definite PBC,

in addition to AIH. For those of us older, we had some long, hard roads before

diagnosis, but rest assured we are all still kicking, maybe not high, but waking

up alive. Believe it or not, it is a blessing to be diagnosed at a younger age.

I wish everyone well, it can be a rocky journey, but we have each other, and

that's something that never happened in the previous generation. We are each

other's strength and resources. Never forget how lucky we are to have each

other.

Kay, 58yo, TX, AIH dx 1995, AMA-neg PBC dx @ stage 2 in 1999

December 9, 2007

One thing I gottta say about this " GROUP " - - everyone here is so upbeat and

positive and it sure has been the best " medicine " for me in my illness - - thank

you ALL from the bottom of my heart. I beleive I am feeling good because of the

positive energy here. Oh and Kay - you're not " old " at all !!!! ~~~ Keep up

the good work.

[ ] Re: Thank you so very much for responding

Kathy, I too want to know the results of your visit to Dr. Little. Dee, my heart

goes out to you more than I can say, my sister committed suicide in 1984 and

I've never gotten over it.