AIH

[Guest guest]

Good message . Years ago when I was really sick with Ulcerative

Colitis (started at 16) I didn't want to turn 30, because I thought

that was close to my end. I had 3 small children and wanted to live

long enough so they would remember me. Now I will be 50, some days

thinking I am close to my end once again. I find myself thinking I just

want to live long enough so my 2 small grandchildren will remember me.

Then I think, hey dejavu. (almost) How greedy can one person be! It's

like changing the rules in the middle of the game. Anyway I am finding

myself more and more thinking, stop worrying about tomorrow and just

count your blessings for today. And when I do, like you I find life is

beautiful and hey if it ends tomorrow I loved every day of it! (even

those spent feeling blah!) I too have a wonderful family and home, and

friends and if I make everyday special for my grandchildren they'll

always remember!

Tell me one thing.....how'd you manage a new car????

Funny story......now, wasn't a few hours ago. Went to hospital this am

for test. My husband had made an appt. last week to have my car fixed

today. Had to cancel my appt. for test last week, rescheduled for

today. He said ok, I'll change car appt. Changed it to tomorrow. NOw,

mind you, for the most part my husband or one of my kids always go with

me to appts. Today I was fine, didn't need anyone. Got 1/2 way there

on turnpike and guess what, my car got on fire!!!!!! Guess I should

have canceled test and fixed car! All ended well, my sister came to

rescue me, wrecker rescued my car, it just got to it's appt a day

early!!!! Course I got to mine 3 hrs late!!!

PSC

[Guest guest]

Hi Jo,

Are you taking Imuran? I guess not everyone takes it, but my Hepatologist

at Scripps Liver Transplant center in La Jolla (San Diego) started me on 50

mgs. of Imuran and 30 mgs. of Prednisone after I was diagnosed with AIH in

December, 1997. I still take 50 mgs. of Imuran and will for the rest of my

life. I'd love to stop taking Prednisone but that might not be possible

for me. Ten mgs. of Prednisone, I've been told, is a good dosage if it

works for you. Supposedly, at 10 mgs. or less, most of the obvious side

effects like moon face, etc., are less apt to happen.

I know how you feel about the irony of having cirrhosis of the liver when

you don't even drink. I've never been more than a very occasional drinker,

i.e., maybe one drink every month or less. My father was an alcoholic and

there's considerable alcoholism in my large, extended Irish Catholic

family. For some reason, only the men have been alcoholics, though. Maybe

that's a genetic thing or else it's a family tradition. My friends and

family were shocked to learn that I had cirrhosis and AIH. Some of them

still don't " get it " that it's not due to secret drinking or some other

kind of excess. Others were surprised because I think that they thought I

was a prude (because of not drinking) and then they had to suspect that I

had a secret life they didn't know about. It's a little funny but I get

tired of trying to educate them.

Don't ever worry about not having anything worth saying! Just talking

about how you feel about what you're going through is worth plenty to you

and to all of us who share your problems in so many ways. Also, it's good

to talk about it. It actually is healthy, I think.

I've also gone through the unrealistic stage of telling myself that I had

somehow achieved a miracle cure of an incurable disease. I now realize

that I can have AIH but that doesn't mean I'll necessarily be sick all the

time. It's like carrying around a time bomb, I admit, but for now, the

fuse isn't lit and I'm happy about that.

My goal has always been to live at least as long as my grandparents did and

both of my Mom's parents lived to age 86. I haven't changed my mind about

that. I expect to be around for a long time. I admit, I spent most of a

year being afraid to plan for a future that I worried wouldn't happen, but

I've gotten over that. You'll pay off that house. It takes awhile to

adjust to the new realities of the changes in your life, but it will

happen, I know.

How far north do you live in Northern California? (I live in Las Vegas).

You know that Stanford and UCSF have an excellent Hepatology and Liver

Transplant center and if your insurance will cover it, you might at least

consider a consultation with them for an assessment of your condition - if

you haven't already. Your doctor, who sounds very caring, certainly won't

mind getting some input from them. Originally, before I started going to

the transplant center at Scripps, I was considering Stanford and I was

impressed. They were even going to let me self refer, but I found out that

my insurance pays 100% at Scripps and would only pay 80% at Stanford.

Don't feel reluctant to post. You couldn't find a group of people who

understand how you feel more than those of us here do.

Take care,

Geri

[Guest guest]

Jo,

Please don't ever feel that what you have to say is not worth

hearing. We all go through very rough times. I have felt so isolated

lately myself and couldn't bring myself to respond to the e-mails. Myself

especially go through periods when I feel no-one could ever understand my

life or fears and even dreams.

Then I pull myself out of my pity pool and face reality head on

again. This group has been so great for me to vent. Then again there are

things I need to get off my chest, but am afraid to put them out in front of

me. The deep dark secrets we carry for fear we may not be accepted. The

few times I have let my guard down I have been destroyed. Building a trust

again is very hard.

The people here have been wonderful----and I can't express enough

how grateful I am to have found them. I hope you continue writing and

sharing with all of us.

Dorothy

> [ ] AIH

>

> From: Cjgillice@...

>

> Hi, I have been subscribing to this list for several months and have been

> reading everyone else's communications. I have not felt that I had

> anything

> worth saying. But now I am feeling down and alone and feel like I would

> like

> to talk to someone who understands what I am going through. I was

> diagnosed

> as positively having AIH (per liver biopsy) in December. In January I was

>

> started on prednisone but only took it for one month. The doctor started

> me

> at 20 mg/day and decreased by 5 mg each week until I was down to nothing.

> I

> had no side effects (except weigh gain) and my labs were in the normal

> range

> afterwards. I have continued to have my labs drawn each month and have

> stayed within normal ranges until a few days ago. I am going through lots

> of

> negative emotions, I guess because I thought I would be different and it

> wouldn't come back. I fooled myself into believing I was cured. My

> doctor

> has now started me on low doses of prednisone, 10 mg. and he says I will

> probably stay on 10mg forever. I am only the second patient that he has

> every had with AIH, and I live in a town of only 10,000. He did recently

> go

> to L.A. to a convention about hepatitis and he spoke with a leading

> specialist on AIH while he was there. That is when he decided that he

> would

> put me on low doses if/when my levels started to rise again. I really

> appreciate my doctor and the fact that he is trying to learn more about my

>

> disease and it's treatment, but I am scared. I don't want to be sick.

> I am 44, I have been divorced for 10 years, my kids are mostly grown

> (the

> youngest is 18 and graduating from high school in another month), I am a

> registered nurse at the local hospital. And my grandmother died from

> cirrohis of the liver caused by alcoholism. I told the doctor that it is

> really ironic that I have a liver disease since I have never drank alcohol

>

> because of watching my grandmother die from cirrhosis of the liver. (Of

> course that was before liver transplants).

> Sometimes when I am working with patients in the hospital, I think they

>

> are healthier than I am (well actually they probably are, since I work

> mostly

> with surgical patients or new moms).

> I appreciate this support group, and I am sorry to be so negative

> today.

> I appreciate you all. I am about to buy a house (my first home that I

> will

> actually own) and I am worried that I won't live to pay it off (of course

> I

> haven't told the loan officer that!). My whole value system has changed

> since I was diagnosed with AIH, Things are not as important, people are

> very

> important. Thank you for being there for me, even though none of you even

>

> knew that I was here, reading and learning from you. Take care.

> Jo

> from Northern CA

>

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> ------------------------------------------------------------------------

> Help someone you may know and love

> Be an Organ Donor!

> Please support the American Liver Foundation.

[Guest guest]

Jo, I just read your posting and though it is my husband, not myself

who was diagnosed with PSC, I see him experiencing alot of the same feelings

you described. He was also trying to believe that his blood work would

normalize and he would be cured. He is very active and healthy and scared to

death of being sick. He is a natural optimist though, and tries his best to

keep a positive attitude and not give in to his fears. He gets a lot of

exercise, distracts himself from his worries by following the stock market,

reading and generally doing everything he did prior to diagnosis. He's

faithful in taking his meds (actigall) and just sees it as a new part of his

daily routine. I am having a harder time of it , as I am fearful of the

future when he may begin to have symptoms. As you said about being worried

about not living to enjoy your home, I also worry about the times ahead we

may not share together because of his illness. But I too, am starting to

take each day as it comes and trying to enjoy it. Being a nurse myself, I

think we are naturally more fearful of illness because we have seen people

suffer from so many different things. When I was working on a medical floor

I often wondered what I would eventually wind up getting. Lets face it, none

of it is appealing. I hope you will continue to find support and comfort in

reading the postings. I dont post often, but am learning so much from

reading about others experiences and they are all so generous with sharing

information. My best wishes for you, hoping you do well physically and

mentally as well. Liz

[Guest guest]

In a message dated 4/28/99 9:23:18 AM Central Daylight Time, MRios81143

writes:

<<

I'M 32 MALE WITH AIH, I USUALLY READ THE MAIL AND TALK 2 PEOPLE ON THE SIDE

INSTEAD OFTHE LIVERSUPPORT, I'VE HAD AIH FOR ABOUT 11 YEARS AND ON THE LIVER

TRANSPLANT LIST HERE IN NYC. THESE LAST COUPLE OF DAYS I HAVE NOT HEARD OF

ANYTHING ABOUT ORGAN DONATION SINCE I BELIEVE THIS IS THE WEEK, OR FOR HEP,

I KNOW I HAVE A RIBBON FOR THE OCCASSION WHICH I WEAR.

THIS WEEK I WILL GO FOR MY REGULAR BLOOD WORK,

CBC-LIVERPROFILE-AMONIA-SUGAR-ETC. i'M CURRENTLY ON 5MG PREDISONE AND 50MGS

IMURAN AND LACTULOSE. PS 50PDS OVERWEIGHT.

I CURRENTLY TALK TO A LADY OUT FROM MASS THAT NEED TO TALK TO SOMEONE ABOUT

HER SON, NOW IF ANYONE CAN HELP WITH A TIP LIKE GERI, I KNOW U'RE ALWAYS

AROUND, SURE BE GLAD. HER SON HAS HIGH ALT AND SHE SAID THAT THE BLOOD TEST

FOR HEP OR OTHERS COME OUT NEGATIVE, HE IS ALWAYS TIRED AND HAS JAUNDICE,

SHE HAS GONE TO SEVERAL DIFFERENT DOCTORS ABOUT THIS PROBLEM AND THE SAME

RESULTS, I KNOW FROM EXPERIENCE I WAS TESTED FOR AUTOIMMUNE SEVERAL YEARS

AGO AND IT CAME OUT NEGATIVE. IT LAST YEAR AT NYU HOSPITAL THAT IT CAME OUT

POSITIVE. i TOLD HER I WOULD GET BACK 2 HER, I HAVE INFORMATION FROM

BEFORE ABOUT AUTOIMMUNE THAT I GOT FROM THIS GROUP. SO PLEASE ANY INPUT,

AND KIMBERLEE I FEEL THE SAME. EVERY THING IS GOING GOOD, HAVE A CAR

APARTMENT BUT NO DOG, BUT A BIKE.

AN AS WELL PLEASE TELL ME HOW SOMEONE CAN BE PART OF LIVERSUPPORT SO THAT I

CAN SEND THAT INFORMATION.

LOTS OF LOVE

MIGUEL RIOS

NYC

PS. I WILL ALSO SEND RESULTS OF MY BLOOD WORKS. THANK U AND GOD BLESS >>

[Guest guest]

Well thanks

For writing me and saying I gave you a boost!! Guess what reading ur

post gave me one lol hey chain reaction!!

!!

[Guest guest]

Ok I have been off the Computer all weekend!!

Now I'm wondering what exactly I said lol the predisone lol

Well It looks like I blush 24-7 lol my cheeks are always red!!

Thank you for being so kind

[Guest guest]

Hi ,

Someone already suggested that your friend's son should go to a major

medical center to be evaluated. Have they ruled out AIH, do you know? My

labs were negative for hepatitis and I thought that was one of the ways

they diagnose AIH (when a person tests negative for hepatitis but has high

or low results in other tests that are autoimmune markers.)

Scripps didn't settle just for a basic liver profile when they tested me

for a transplant. They took 40 vials of blood and sent many of them to

outside labs for tests I've never seen mentioned in this support group. I

know that they were confirming the diagnosis because of the notes. But,

there are other diseases, some very rare, that could be causing the

elevated labs and jaundice in your friend's son. I hate to say this, but

not all of the medical community is blessed with inquiring minds. They can

sometimes stop short of persisting until they have answers, or insurance

companies refuse to allow some of the more expensive tests and the patient

may not know that's the reason the tests weren't done (or even that they

should have been done.)

Something I've never seen mentioned by anyone else in this group that seems

to be related to AIH are two lab tests called CA 125 and CA 19. CA 125 is

usually thought to be indication of the possibility that a woman might

have ovarian cancer. CA 19, I believe, can indicate pancreatic cancer.

For 4 years before I was diagnosed with AIH I had increasing CA 125

levels. Normal is under 45 and mine increased very little, but kept

rising. Finally, in 1996 I agreed to a hysterectomy to rule out ovarian

cancer (the only way it's possible). I wasn't tested again until the same

week I was hospitalized with AIH. My CA 125 was well over 1500!!! The

same doctor also ordered a CA 19 and it was equally elevated to very high

numbers, but pancreatic cancer was ruled out through diagnostic tests (CT

scan, etc., etc.) The first Hepatologist I saw told me that many

physicians don't realize that elevated CA 125 and 19 can indicate AIH so

they don't order the test. It's a simple blood test and I would think that

it should be part of the process of elimination when someone is suspected

to have AIH,

How are you doing? You've been on the transplant list for a long time, so

I hope that's good news.

Take care,

Geri

[Guest guest]

,

<< I'M DOING FINE I DID 43MILES TODAY IN THE NEW YORK CITY BIKE TOUR >>

You're doing more than fine, you're doing great! I wish I could make it

around the block. Actually, I'm okay but a bike tour sounds like an

ambitious undertaking, especially considering your medical situation. Do

you find that you need to eat something to replenish potassium when you do

something strenuous? I'm wondering if potassium is one of the things that

are in shaky balance for those who are being treated for liver disease.

I knew nothing about organ donation week until you mentioned it, and I

subscribe to (and read) two newspapers and watch both morning and nightly

news shows. Shame on our local media for not doing something about public

awareness.

Keep up the great attitude, . You're an inspiration.

Take care,

Geri

[Guest guest]

HI everyone,

hey geri, well i do feel good, but there are times that i get the shakes on

my hands and then i feel like i'm going to pass out if i don't get anything

sweet in my system, i made sure i had water and at the stops i bit into the

oranges and suck the juice, grab a few bananas and kept riding. I do a few

rides but mostly like 15 to 20 miles, so this was a jump. I felt great after

the snacks. I hope i could keep it up.

Well until next time, take care.

lol

nyc

[Guest guest]

Rocco:

There are many theories about what causes the immune system to go haywire. A

lot of researchers believe that there is a 'trigger' that causes people with

a genetic propensity for auto immune illness to get sick. The problem is

that the 'trigger' is usually different for everyone. It can be toxic

chemicals in their environment, or over the counter or prescription drugs or

hormones, extreme stress or even something like extreme fast weight loss or

pregnancy. In my own family, both my mother and my sister developed

arthritis after pregnancy. A good sight for looking into auto immune illness

and it's causes is www.aarda.org. It also tends to manifest itself

differently in families. One person will have diabetes, another arthritis or

another with lupus or AIH. Hope this was helpful.

Kathy (AIH)

Seattle area

[Guest guest]

Kathy

Thanks for the information and the site, so I can find out more about AIH.

I can understand this from the stand point of Luekemia. There are certain

genes that normally remain dormant, until something " triggers " them. Such

as radiation - directly or indirectly. Why some people are effected and

others

under the same circumstances - nothing. You don't even need that kind of a

source, it just happens - anything can be a trigger...

Rocco

Re: [ ] AIH

> From: KATBERCOO@...

>

> Rocco:

>

> There are many theories about what causes the immune system to go haywire.

A

> lot of researchers believe that there is a 'trigger' that causes people

with

> a genetic propensity for auto immune illness to get sick. The problem is

> that the 'trigger' is usually different for everyone. It can be toxic

> chemicals in their environment, or over the counter or prescription drugs

or

> hormones, extreme stress or even something like extreme fast weight loss

or

> pregnancy. In my own family, both my mother and my sister developed

> arthritis after pregnancy. A good sight for looking into auto immune

illness

> and it's causes is www.aarda.org. It also tends to manifest itself

> differently in families. One person will have diabetes, another arthritis

or

> another with lupus or AIH. Hope this was helpful.

>

> Kathy (AIH)

> Seattle area

>

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>

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[Guest guest]

According to an article written by Dr. Albert J. Czaja, intitled " Autoimmune

Hepatitis " (Found in a book for physicians at my local hospital library). It

states that " Autoimmune hepatitis is a self-perpetuating hepatocellular

inflammation of unknown cause. It is characterized by the presence of

periportal hepatitis (piecemeal necrosis or interface hepatitis) on

histologic examination. " It then shows a picture of the cells and how they

look. In English this is saying that the cells of the liver change or die in

a specific pattern that is associated with AIH, but it is not " disease

specific " . These cells can be identified by liver biopsy. In my own biopsy

report it states that the cell changes are consistance with autoimmune

hepatitis. So this is why they do a liver biopsy, to identify if the cell

damage is consistant with AIH, and to determine the amount or level of damage

and/or inflammation. Just my two cents worth.

Jo from N. CA

[Guest guest]

HI

I have had Fibromyalgia and will have my first bone

density test shortly. I am also waiting for the AIH

diagnosis but the two doctors I see routinely seem to

think I do have it..still waiting for hep eval.

I highly recommend using warm water therapy for your

FM. It helped me tremendously!!!

Jody

===

ISO B-family

DOB 5-23-61

b-name: Compton

*VOTE TO RE-ESTABLISH ADOPTEES RIGHTS TO KNOW THEIR

FAMILIES**

---CNCBUSSEY@... wrote:

>

> From: CNCBUSSEY@...

>

> ORIGINALLY DIAGNOSED WITH AIH IN 1995. I TOOK 6MP

TOGETHER WITH PREDNISONE (40 MG) FOR APPROXIMATELY 2

YEARS. SUFFERED GALLSTONES IN FEBRUARY OF 1996

REQUIRING SURGERY. ALSO, IN THE

> SUMMER OF 1996 SUFFERED A SERIOUS ATTACK OF AIH IN

> ALMOST TOTAL LIVER FAILURE. WAS PUT ON 60 MG OF

PREDNISONE FOR APPROXIMATELY 4 MONTHS, BRINGING IT

> UNDER CONTROL. IN THE SPRING OF 1999 I HAD TO HAVE

CATARACTS REMOVED FROM BOTH EYES (CAUSED BY

PREDNISONE. I WAS INFORMED BY MY RHEUMATOLOGIST

YESTERDAY THAT I AM GOING TO HAVE TO GET OFF OF THE

PREDNISONE BECAUSE OF THE MUSCLE AND BONE DAMAGE IT

IS DOING. I HAVE BEEN ON 10 MG FOR APPROXIMATE 9

MONTHS WITH NORMAL LIVER TESTS. I REALLY DO NOT KNOW

HOW TO FEEL ABOUT GETTING OFF OF THE PREDNISONE, IT'S

REALLY SCARY TO THINK OF ANOTHER ATTACK. I SEEM TO

BE TIRED ALL OF THE TIME AND HAVE TO MAKE MY SELF DO

THINGS. I KNOW I HAVE TO KEEP MOVING BECASUE OF MY

ARTHRITIS, BUT IT IS AWFULLY HARD. DOES ANYONE KNOW

IF THE TIREDNESS IS DUE TO THE ILLNESS OR THE

PREDNISONE.? I HAVE THE MOOD SWINGS AND DEPRESSION

THAT GO WITH THE PREDNISONE, BUT CANNOT

> TAKE THE ANTI-DEPRESSANTS. THEY MAKE BE FEEL LIKE

SOME KIND OF ZOMBIE. DOES ANYONE ELSE HAVE THE

FIBROMYALGIA AND BONE LOSS? THEY ARE RECOMMENDING

WARM WATER THERAPY AND I WONDER IF ANYONE ELSE HAS

TRIED IT. THANKS SO MUCH CNCBUSSEY

>

> ---------------------------

[Guest guest]

Elaine,

I suspect that some of us might deny the fatigue we feel. I know that I

refused to acknowledge it for a long time before I was diagnosed. I

physically drove myself too hard and thought that I was tired because I was

trying to deal with more than I could handle. When I first started taking

the meds after diagnosis, however, the word " fatigue " took on new meaning.

I couldn't walk across a room without collapsing in exhaustion. I don't

remember how long this lasted but I do remember one day telling myself that

I couldn't go on pretending to live that way and I was going to have to

return to " life " . I dragged myself around and gradually began to come back

to life - though with considerable aches and pains, mostly because of

muscle spasm in my back and legs. But, I still associate the severe

fatigue with the meds, not the disease.

Take care,

Geri

[Guest guest]

JODY, DID YOU GET IT A HOT TUB OR DID YOU ATTEND A WATER THERAPY GROUP. I

AM TRYING TO DETERMINE IF ONE WOULD BE BETTER THAN THE OTHER. I WOULD HAVE

TO DRIVE 50 MILES ONE WAY TO ATTEND A WATER THERAPY GROUP. IF THE HOT TUB

WOULD HELP, I COULD HAVE IT RIGHT HERE AT HOME.

THIS DISEASE CAN SOMETIMES BE HARD TO RECOGNIZE I GUESS. I WAS FORTUNATE

THAT MY GASTROENTROLOGIST RECOGNIZED IT AT ITS EARLY STAGE. I HAVE BEEN

RESPONDING TO PREDNISONE REALLY WELL BUT I JUST

CAN'T SEEM TO HANDLE ALL OF THE SIDE EFFECTS. THE ONLY ONE LEFT FOR ME KNOW

IS SUGAR DIABETES.

ANY INFO YOU CAN SHARE I WOULD GREATLY APPRECIATE.

CARLOTTA

[Guest guest]

GERI: ARE YOU ON ANYTHING OTHER THAN 5MG OF PREDNISONE? I AM A LITTLE

APPREHENSIVE ABOUT DROPPING THE PRED BUT I AM GOING TO 5 MG

SO I HOPE IT WILL BE ALLRIGHT. I, TOO, HAVE OSTEOPOROSIS. I HAVE BEEN

TAKING TUMS BUT NOW THEY TELL ME THAT IS NOT ENOUGH. THEY ARE TALKING ABOUT

SOME KIND OF NASAL SPRAY.

I AM GOING TO HAVE MY FIRST BONE DENSITY TEST NEXT WEEK. I KNOW NOTHING

ABOUT IT OR HOW IT IS DONE. TELL ME WHAT YOU KNOW PLEASE.

AS FAR AS THE TREATMENT PROCESS, I'M NOT SURE WHAT IS THE RIGHT THING TO DO.

MY PROBLEMS ALL STARTED WITH A BACK OPERATION WHERE THEY IMPLANTED PEDICLE

SCREWS AND PLATES. MY FAMILY PHYSICIAN STILL THINKS THEY HAVE SOMETHING TO

DO WITH IT. HAVE YOU HEARD ANYTHING

ABOUT THAT POSSIBILITY. I'M LOOKING FOR ANYTHING TO GET THIS STUFF TO GO

AWAY.

THANK YOU SO MUCH FOR YOUR NOTE. I APPRECIATE IT VERY MUCH. GOOD LUCK AND

GOD BLESS. CARLOTTA---OKLAHOMA

[Guest guest]

GERI; THE WARM WATER THERAPY IS WATER EXERCISES IN WARM WATER. IT IS

SUPPOSED TO BE REAL GOOD FOR THE FIBROMYALGIA. I AM TRYING TO DETERMINE IF A

HOT TUB WOULD SERVE THE SAME PURPOSE. I WOULD HAVE TO DRIVE 50 MILES ONE WAY

FOR THE WATER THERAPY AND COULD HAVE THE HOT TUB RIGHT HERE AT THE HOUSE.

TAKE CARE

CARLOTTA

[Guest guest]

Carlotta,

I've heard that swimming is excellent for back problems and for arthritis.

Warm water therapy makes sense to me, but we don't have a hot tub and no

room to install one. It's probably something to think about buy boy, do I

hate the way my body looks these days. Hard to imagine baring most of me

in a public place. Maybe warm baths would be therapeutic too?

Thanks,

Geri

[Guest guest]

Margo,

Where do you live in Florida? I'm in Fort Myers, and we have others here

from Miami, Fort Lauderdale, and two other citys that I can't remember at the

moment! LOL

I know exactly what you mean about feeling like no one around you

understands... It's a very lonely feeling, but you have come to the right

place! We understand because we go through the same stuff... Feel free to

unload here, we all do from time to time. Sometimes it helps so much that I

just want to climb through the monitor and hug someone!

Glad you found us...

(AIH)

[Guest guest]

Dear Margo:

Welcome to the group! My name is Kathy and I'm 39 years old. I'm one of

those on 'lifetime' prednisone, too. I've had AIH just about 5 years now and

have been on the prednisone about that long. I have all the nasty side

affects even though I'm currently at 8 mg. I've only had one relapse so far,

but have been told that it would likely happen again if I ever went off the

prednisone. I can't take Imuran either. Recently my hepatologist tried me

on Cyclosporine, but I couldn't take the dosage recommended. I saw him on

Friday and he doesn't want me to try a lower dosage at this time, but said it

might be an option later on down the road.

I completely understand your frustration about not being understood. Even

the doctors lose patience and start to treat us with condescension and lack

of understanding. I was very grateful to find this group and to be able to

vent both about my condition and about the crappy way I'm treated by the

medical community most of the time. You're among friends here.

I know what you mean about the 'time table,' too. I've tried to get away

from thinking too much about it. All of us are different and they shouldn't

say things like that to us and start us worrying about 'how much time.' My

hepatologist recently told me that I'd probably be looking at transplant in

about 5 years, even though I've been in 'remission' for close to 2 years now

(remission meaning stable LFT's). I don't know whether that will really

happen or not, but in the meantime I've been doing everything I can to get as

healthy as possible within the limitations of the 'prednisone sickness.'

I think it's great that you've managed on prednisone for 16 years. I think

it's a good sign that you're managing on such a low dose. Even if it stopped

working at the dosage you're at, there is always the option of raising the

dose. I don't think that it suddenly stops working overnight. Did your

relapses occur on lower dosages, or at the 5 mg.? Mine occurred when I was

temporarily weaned completely off. When my LFT's shot back up, they put me

back from 0 to 20 mg. It was tough. It's taken me about 2 years to get to 8

mg. from that 20.

Well, sorry to go on so long. I meant to just say 'welcome'! Good luck to

you. Take care and write anytime!

Kathy (AIH)

Seattle area

[Guest guest]

It is interesting the way my doc changed his attitude from condescension to

comraderie after I told him I am RN.

J

>From: KATBERCOO@...

>Reply- onelist

> onelist

>Subject: Re: [ ] RE: AIH

>Date: Sun, 3 Oct 1999 13:05:42 EDT

>MIME-Version: 1.0

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>Dear Margo:

>

>Welcome to the group! My name is Kathy and I'm 39 years old. I'm one of

>those on 'lifetime' prednisone, too. I've had AIH just about 5 years now

>and

>have been on the prednisone about that long. I have all the nasty side

>affects even though I'm currently at 8 mg. I've only had one relapse so

>far,

>but have been told that it would likely happen again if I ever went off the

>prednisone. I can't take Imuran either. Recently my hepatologist tried me

>on Cyclosporine, but I couldn't take the dosage recommended. I saw him on

>Friday and he doesn't want me to try a lower dosage at this time, but said

>it

>might be an option later on down the road.

>

>I completely understand your frustration about not being understood. Even

>the doctors lose patience and start to treat us with condescension and lack

>of understanding. I was very grateful to find this group and to be able to

>vent both about my condition and about the crappy way I'm treated by the

>medical community most of the time. You're among friends here.

>

>I know what you mean about the 'time table,' too. I've tried to get away

>from thinking too much about it. All of us are different and they

>shouldn't

>say things like that to us and start us worrying about 'how much time.' My

>hepatologist recently told me that I'd probably be looking at transplant in

>about 5 years, even though I've been in 'remission' for close to 2 years

>now

>(remission meaning stable LFT's). I don't know whether that will really

>happen or not, but in the meantime I've been doing everything I can to get

>as

>healthy as possible within the limitations of the 'prednisone sickness.'

>

>I think it's great that you've managed on prednisone for 16 years. I think

>it's a good sign that you're managing on such a low dose. Even if it

>stopped

>working at the dosage you're at, there is always the option of raising the

>dose. I don't think that it suddenly stops working overnight. Did your

>relapses occur on lower dosages, or at the 5 mg.? Mine occurred when I was

>temporarily weaned completely off. When my LFT's shot back up, they put me

>back from 0 to 20 mg. It was tough. It's taken me about 2 years to get to

>8

>mg. from that 20.

>

>Well, sorry to go on so long. I meant to just say 'welcome'! Good luck to

>you. Take care and write anytime!

>

>Kathy (AIH)

>Seattle area

>

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[Guest guest]

Hello, I too am new to this group. I have been reading everyone's postings

for @ 2 weeks now and I wish I knew about this site last year. I have learned

more here than with the healthcare system.

I am writing for my son, who at age 13 was diagnosed with AIH. Needless to

say, this last year has been tough for our family. I'll try to make this

short, but I find his situation so bizarre.

Last Oct. my son, Mark, was jaundiced. Pediatrician suspected Hep A, but his

blood levels were astronomical - ALT 1,983; AST - 1,533, Total bilirubin -

7.2!!! He had an ultra sound, which was ok. Started to treat with Ped Gastro

Dr, who for two months since believed he had HEP A. He suggested a liver

biopsy and Mark was to stay overnight at St. 's Hospital for

Children in Philadelphia for a needle biopsy. Well additional blood tests

showed his Pt time at 19.8!! So for two days they tried to lower his PT count

with fresh frozen plasma and it didn't go down far enough for a needle

biopsy, so they had to do an open biopsy. It was performed by a Dr. Dunn who

does liver transplants at St. Chris's and that night we were told our son had

liver damage. This was on a Friday and we had to wait for the biopsy results

over the weekend. After 3 nights at St. Chris' s we were sent home and I

thought I was going to have a nervous breakdown. No one gave us much info.

All we heard was we have to wait for the biopsy to come back.

On Monday eve the Dr called and told us the biopsy showed fibrosis and PSC

and that Mark had to get an ERCP asap. I had to find a Dr to perform this

procedure because it had to be done by an adult GI Dr. Our health insurance

gave us a hassle about going to Phila, since we live @ 1 and one hal hours

away and told we had to go elsewhere in our region. So I called Hershey

Medical Center, which is affiliated with the medical school of Penn State

University. I wish we were there from the beginning. So on the following

Friday Mark was given an ERCP and the Dr came out quite quickly and told us

he did not have PSC, but had so many allergy cells and actually had an

allergic reaction to one of the anesthesia meds and he felt Mark had AIH.

Still not confirmed, because he had to treat with the Ped Gastro Dr. at

Herhey. So for Fridays in a row my " baby " was under general anestesia right

before Christmas and has a chronic disease. I thought I was going to looses

it. But many prayer chains pulled me through.

Now Mark is inbetween 2 Drs, one in Phila and one in Hershey, who both know

one another and now they are at odds as to Mark's treatment. So, I had to

choose a Dr to treat my son. The Dr in Phila wasn't even going to start him

on predniaone, felt he needed a liver transpalnt and might have Hep C, since

something on the biopsy showed that too. Well Mark went through more blood

tests and the special Hep C one came back negative, so the whole biopsy was

read incorrectly and deamed to be indeterminant???? Every time I tried to

bring this up to any Dr Mark saw they just shrudgged their shoulders. I was

told that if the predniaone worked, it was AIH, since some other blood test

levels also pointed to the AIH.

Afetr 5 months on 40 mgs of prednisone and 3 months on 50 mgs of Imuran,

Mark's ALT and AST returned to the normal range. His bilirubin and PT went to

normal almost immediately in January and have been normal ever since. Since

May Mark is being weaned off the prednisone and is currently at 10 mgs every

other day, but had to increase the Imuran to 100mgs, since the LFT started to

rise. Now I think they might have been weaning him off too aggressively?? Of

course I am worried they didn't stay in the normal range too long. He goes

for blood work @ every 2 to 3 weeks.

Does anyone know of anyone this young having AIH? What has been your

experiences with being weaned off the meds? Mark has never had any symptoms

besides the jaundice. Never complains, except for the acne from the

prednisone. THANKS SO MUCH FOR LISTENING.

A concerned and worried Mom,

[Guest guest]

Dear J:

I once had an ER doctor treat me real nice because he thought I was a nurse

that he had met at another hospital. As soon as he found out that I wasn't

who he thought I was, down came the veil of condescension. It was a real eye

opener. I've never understood why we get treated that way so often. It

might be what they refer to as 'professional detachment,' but I wonder how

many of them realize how they seem to us. I was just thinking today about

how I don't take the kind of treatment that my doctor gives me from anyone

else, and I really questioned myself as to why I take it from him. In a lot

of cases it's because we don't have anywhere else to turn. I can't think of

any other profession where you pay for a service and get treated like so much

doggy doo.

Kathy (AIH)

Seattle area

[Guest guest]

Hello Davette

I'm 27 and I've had aih, for 3 years. and i have had a blood test every

month since i was diagnosed!! it gets very frustrating, and no one

really understands it (including) the doctors. (unless u have it)

Any help I can give just ask