A new member

Posted July 5, 1999 · July 5, 1999

Dear Janelle:

Hi! I'm from Seattle area, too. Actually I live in Sultan, which is about

50-60 miles from Seattle. Your case is similar to mine in that I also had an

initial onslaught of real high enzymes and extreme jaundice. I sympathize

with your problems with fatigue and nausea. I also got to the point where

they said if there was no improvement I would go on 'emergency' transplant

list. I was started on prednisone not too long after that too. I've had the

illness now for a little more than 4 years. I've been in 'remission' for a

year and a half. I've been on prednisone the whole time, but am beginning to

have serious problems from it. I went and saw a hepatologist at the UW, and

he's going to try to get me off the prednisone. I'm going to see him this

Friday and finish up some tests to see if I can take cyclosporin (I was

unable to take Imuran).

Good luck to you. If you'd like to write to me personally, my e-mail address

is KATBERCOO@.... Welcome to the group!

Kathy (AIH)

Seattle area

Posted July 6, 1999 · July 6, 1999

Janelle:

Welcome to the group. I think you will find the answers you need here. My

doctor had to ween my of other medication when I went to his office telling

him all I want to do is sleep, sleep and sleep. My middle section had

blotted out like I was pregnant and I knew that was not the case. The liver

blood tests were very very high which I had done every other day for two

weeks. I hate needles. After that I was sent to a specialist and she took

blood tests and put me in the hospital for a day for a Liver biopsy. Well

after one month I found out I had AIH. She started with 40 mg of Prednisone

and a month later added the Imuran 50. I was seeing she and my regular

doctor. I was off work for three months and when I went back the owners

asked me to go to the Mayo Clinic for a second opinion. Well I did go and

and I still had AIH but the specialist was very unhappy with me to doubt her.

So I see my doctor here in town and he has read and learned along with me

what is AIH. I have tried to get off the prednisone three times now and

without any good results. I had just relapsed in June trying a test drug

with the Mayo. I guess I will have to be on the medicine for the rest of my

life. I hope at your young age you find out everything that can be found

about it and ask questions to the group. I would not made it with the people

here.

Sue AIH

Wisconsin

Posted July 6, 1999 · July 6, 1999

Janelle:

My AIH came on exactly the same way as yours...nausea, itching, etc. The only

difference is that I did not turn bright yellow. That's probably the reason it

took so long to diagnose my AIH (doctors went through Lyme Disease, Arthritis,

Lupus, you name it before they finally diagnosed me by process of elimination).

Anyway, welcome to the list. You will find this group extremely helpful. I

thought I was going insane and becoming a hypochondriac before I found this

group. Now I'm realizing that all the stuff I was experiencing was normal, not

crazy. What a relief!

Kaye AIH Ohio

jasplund@... wrote:

> From: jasplund@...

>

> Hello all. Although this is my first posting, I've been reading the archives

for a few weeks now, and have not only learned a great deal (certainly more than

my doctor has told me!) but taken an enormous amount of comfort from your

collective wisdom. More than anything this list is helping me come to terms with

my recent (May) diagnosis of AIH. Here's a little background: I'm 26, live in

Seattle, and in March, began to experience persistent stomach upset and nausea,

along with joint pain and fatigue. My doctor initially chalked up the stomach

problems to an ulcer, but decided to run some blood tests anyway; I helped him

dismiss the joint pain and fatigue by speculating that they were to due to an

especially heavy workload and a new kickboxing class (how's that for bitter

irony?! Just as soon as I decide to start taking my health seriously, I get

diagnosed with this stinkin' disease!). Blood tests came back, showing elevated

LFT's but nothing more definitive, so my doctor concluded I

> probably have hep A and told me to come back in 3 weeks to see if the hep A

antibodies show up. Oh boy, what a 3 weeks: the nausea progressed to regular

vomiting, the fatigue worsened to the point where I could barely get out of bed,

I turned bright yellow (the nurse at the doctor's office told me she'd never

seen anyone so jaundiced!) and started itching, etc, etc. So I report back to

the doctor's office 3 weeks later, at which point it immediately became clear to

him that I don't have a simple case of food-borne illness. He scheduled me with

a gastroenterologist, GI did a biopsy, and after getting the results back,

speculated that I may have AIH. In retrospect, I realize he must have been more

sure of that diagnosis than he let on, since he started me on 60 mg of

prednisone and 750 mg of Urso then and there. He then sent the slides to a

renowned liver pathologist at Berkeley, who later confirmed the diagnosis. Now

I'm not actually sure what my biopsy showed in terms of inflammation

> and/or scarring (of course that will be the first thing I'll ask about at my

next appt.), but I'm guessing it was bad since apparently the pathologist--who

makes her living looking at messed up livers--felt compelled to comment on how

bad mine looked. Also, later, my doctor told me that if the meds hadn't started

kicking in, he would've put me on the transplant list right away--I'm guessing

that means I was closer to liver failure than I suspected. Does that sound right

to any of you? Up until that point, I hadn't fully appreciated the seriousness

of what was happening to me, and really didn't until my doctor told me this is

not a curable disease and that I'll probably be on meds " indefinitely. "

>

> Although I was diagnosed in record time compared to some of you, I'm still

reeling from the blow. I'm down to 40mg of pred. now, but it's certainly doing

it's fair share in making this already difficult time worse. I wanted to ask:

how soon did people start to gain weight? I've been on it for 2 mos. now and

mercifully haven't gained anything (though my checks are fat, I'm getting

decidedly furry, and a hump is coming up, among other things). I'm not day-glo

yellow anymore, though, so I suppose I should be grateful for that (oh yeah: and

I'm not dead!). I've also started on 150mg of Imuran, so I'm hoping that will do

its business sucessfully.

>

> Phew! I apologize for this novel-length post, but it sure does help to narrate

these traumatic past couple of months to people whom I know will understand.

I've gained so much from reading your previous postings, and, just as I have

plenty more to say and ask, I'm sure you all have plenty more to teach. Thanks.

>

> Janelle AIH

> Seattle

>

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

Posted July 10, 1999 · July 10, 1999

Janelle,

Welcome.

Doesn't it make you feel a little better just to get things off your chest

to this group. No one thinks you are a hypochondriac, they all know almost

exactly how you are feeling.

SueB.

----------

> From: jasplund@...

> onelist

> Subject: [ ] a new member

> Date: Tuesday, 6 July 1999 6:49

>

> From: jasplund@...

>

> Hello all. Although this is my first posting, I've been reading the

archives for a few weeks now, and have not only learned a great deal

(certainly more than my doctor has told me!) but taken an enormous amount

of comfort from your collective wisdom. More than anything this list is

helping me come to terms with my recent (May) diagnosis of AIH. Here's a

little background: I'm 26, live in Seattle, and in March, began to

experience persistent stomach upset and nausea, along with joint pain and

fatigue. My doctor initially chalked up the stomach problems to an ulcer,

but decided to run some blood tests anyway; I helped him dismiss the joint

pain and fatigue by speculating that they were to due to an especially

heavy workload and a new kickboxing class (how's that for bitter irony?!

Just as soon as I decide to start taking my health seriously, I get

diagnosed with this stinkin' disease!). Blood tests came back, showing

elevated LFT's but nothing more definitive, so my doctor concluded I

probably have hep A and te

>

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

Posted January 10, 2002 · January 10, 2002

Welcome ,

I'm sorry you are so far into it at such an early stage. It sounds like alot of what you are feeling could be from the prednisone, but not sure since you weren't on a very high dosage. I can't answer many questions about the cirrhosis but Palmer's book Hepatitis and Liver Disease is an excellent source for information. This group is also excellent and I'm sure someone on here has an answer for you. Welcome again and good luck.

Bethanne

dwjam <dwjam@...> wrote: Hi everyone,My name is . I'm 44 years old married with 3 teens girls.I live in Canada. I have been diagnosed with autoimmune hepatits at the beginning of Otober 2000. This was confirmed with a biopsy of the liver.I have a subsential degree of fibrosis which is creating bridging and is associated with regenerative nodules (stage 4 fibrosis, cirrhosis), associated with quite active portal inflammation with piecemeal necrosis and obliteration of the limiting plate in many areas. To resume I have an established cirrhosis with evidence of ongoing inflammation of grade 2 or 3.My dr. immediately gave me prednisone 10 mg. and azathioprine (Immuran)50 mg. - My numbers got down during a period of 8 weeks with every 2nd weeks blood test confirmed it. Since the last week of December i'm down on the prednisone to 7.5 mg.I don't know anyone that has this sickness around my area. When I ask question about things like the shakes that never leaves me for about 2 months now or the sudden feeling of being so weak or the tears that come down for nothing, or the ache that comes from you don't know where and why, or the arthristis... I felt noone understood not even myself. Just reading the messages in my e-mail today I felt happy that I was'nt turning crazy LOL and other people had the shakes and the symptomes and everything. I have no idea who started the group but thank you.... I have questions concerning what happens to the cirrhoses when the numbers are down. I know it doesnt get better but i read somewhere that people with autoimmune hepatitis can developp cirrhoses,,, and sice mine is quite developp i wandered...... Well thank you all for listening to me... It just feels good and if someone has a answer I'd love to hear it...I send my hopes to all of you - have a great day no matter what comes along.....

Posted January 11, 2002 · January 11, 2002

Welcome ...you have a liver similar to mine in the degree of cirrhosis. I was diagnosed AIH by biopsy in Jan 2000. I don't post too frequently due to fatigue and tending my 2 teenagers (I'm 46 on Sat, widowed, son 16, daughter 14).

My name is also , so we may need to identify ourselves by location...I'm in Florida. You will find a wealth of information and lots of support and love from this group. I wish the best for you.

God bless,

, FL

Posted January 11, 2002 · January 11, 2002

Hi from Florida,

It's great being able to hear from someone who has the

same symptoms. I don't feel so lonely knowing others

know what's its like. I hope everyone will be patient

with my english since french is my mother tongue but i

think it's not too bad and everything on this desease

is in english and even my doctors are english speaking

people. I wish i will be able to chat with some

people in the group so i could get to know them

better. Some sound great. Teens are really a full

hand but i am almost done my girls are 21, 19 and 17.

It is so stressfull sometimes...at least now i know

why i couldn't handle much stress being always so

tired. If you ever get to chat sometime let me know.

Thanks for your respond and take care of you... HUGS

from Canada

--- dagelo <dagelo@...> wrote:

> Welcome ...you have a liver similar to mine in

> the degree of cirrhosis. I was diagnosed AIH by

> biopsy in Jan 2000. I don't post too frequently due

> to fatigue and tending my 2 teenagers (I'm 46 on

> Sat, widowed, son 16, daughter 14).

>

> My name is also , so we may need to identify

> ourselves by location...I'm in Florida. You will

> find a wealth of information and lots of support and

> love from this group. I wish the best for you.

> God bless,

> , FL

>

__________________________________________________

Posted January 11, 2002 · January 11, 2002

Hi Bethanne

Thanks for the welcome and for the information. I

will check into this book you are suggesting. There

is not much information on the internet sites

concerning AIH with stage 4 cirrhose. I hope i'll get

to know people that are living through it so i can

have a idea of what to expect. I read things and i

hear other things from my doctor. And everyone else

here don't seem to know much about all this. It is

really a confort to have found this group. I hope to

have a chance to chat with some members, but each time

i go there there is nobody... Well i imagine i will

succeed at some point to chat with some people.

I have ton of questions concerning infections of any

kind (how it affects us) and should we or should we

not take any antibiotics? Why did my doctor told me

not to eat any sugar that that may be dangerous for me

? ...Anyhow.... i think i really needed to talk to

someone..... Sorry if my notes are so long and my

english so so.. Hope to talk to you again Take care

HUGS - from Canada

--- Bethanne <bamrand@...> wrote:

>

> Welcome ,

> I'm sorry you are so far into it at such an early

> stage. It sounds like alot of what you are feeling

> could be from the prednisone, but not sure since you

> weren't on a very high dosage. I can't answer many

> questions about the cirrhosis but Palmer's

> book Hepatitis and Liver Disease is an excellent

> source for information. This group is also

> excellent and I'm sure someone on here has an answer

> for you. Welcome again and good luck.

> Bethanne

> dwjam <dwjam@...> wrote: Hi everyone,

> My name is . I'm 44 years old married with 3

> teens girls.

> I live in Canada. I have been diagnosed with

> autoimmune hepatits at

> the beginning of Otober 2000. This was confirmed

> with a biopsy of

> the liver.I have a subsential degree of fibrosis

> which is creating

> bridging and is associated with regenerative nodules

> (stage 4

> fibrosis, cirrhosis), associated with quite active

> portal

> inflammation with piecemeal necrosis and

> obliteration of the limiting

> plate in many areas. To resume I have an

> established cirrhosis with

> evidence of ongoing inflammation of grade 2 or 3.

> My dr. immediately gave me prednisone 10 mg. and

> azathioprine

> (Immuran)50 mg. - My numbers got down during a

> period of 8 weeks

> with every 2nd weeks blood test confirmed it. Since

> the last week of

> December i'm down on the prednisone to 7.5 mg.

> I don't know anyone that has this sickness around my

> area. When I

> ask question about things like the shakes that never

> leaves me for

> about 2 months now or the sudden feeling of being so

> weak or the

> tears that come down for nothing, or the ache that

> comes from you

> don't know where and why, or the arthristis... I

> felt noone

> understood not even myself.

> Just reading the messages in my e-mail today I felt

> happy that I

> was'nt turning crazy LOL and other people had the

> shakes and the

> symptomes and everything. I have no idea who

> started the group but

> thank you.... I have questions concerning what

> happens to the

> cirrhoses when the numbers are down. I know it

> doesnt get better but

> i read somewhere that people with autoimmune

> hepatitis can developp

> cirrhoses,,, and sice mine is quite developp i

> wandered...... Well

> thank you all for listening to me... It just feels

> good and if

> someone has a answer I'd love to hear it...

> I send my hopes to all of you - have a great day no

> matter what comes

> along.....

>

Posted January 11, 2002 · January 11, 2002

Welcome . So sorry that you have to bear this disease! Things will even out emotionally I am told....am still waiting for it to happen! I was dx July of 2001 and am just beginning to feel like I am going to survive! This group has been of such help! I feel stronger each day when I read the posts! I know you will find out much info here!

debby

[ ] A new member

Hi everyone,My name is . I'm 44 years old married with 3 teens girls.I live in Canada. I have been diagnosed with autoimmune hepatits at the beginning of Otober 2000. This was confirmed with a biopsy of the liver.I have a subsential degree of fibrosis which is creating bridging and is associated with regenerative nodules (stage 4 fibrosis, cirrhosis), associated with quite active portal inflammation with piecemeal necrosis and obliteration of the limiting plate in many areas. To resume I have an established cirrhosis with evidence of ongoing inflammation of grade 2 or 3.My dr. immediately gave me prednisone 10 mg. and azathioprine (Immuran)50 mg. - My numbers got down during a period of 8 weeks with every 2nd weeks blood test confirmed it. Since the last week of December i'm down on the prednisone to 7.5 mg.I don't know anyone that has this sickness around my area. When I ask question about things like the shakes that never leaves me for about 2 months now or the sudden feeling of being so weak or the tears that come down for nothing, or the ache that comes from you don't know where and why, or the arthristis... I felt noone understood not even myself. Just reading the messages in my e-mail today I felt happy that I was'nt turning crazy LOL and other people had the shakes and the symptomes and everything. I have no idea who started the group but thank you.... I have questions concerning what happens to the cirrhoses when the numbers are down. I know it doesnt get better but i read somewhere that people with autoimmune hepatitis can developp cirrhoses,,, and sice mine is quite developp i wandered...... Well thank you all for listening to me... It just feels good and if someone has a answer I'd love to hear it...I send my hopes to all of you - have a great day no matter what comes along.....

Posted January 11, 2002 · January 11, 2002

Dear ,

SOOOOO glad you found us...... sorry why you had to find us tho.... the more you read the posts you will find this group is so supportive in everything that happens to you.... the good news, the bad news, you just wanting to vent --LOL and boy have we had venting in the past ..... a place to go when you think you are losing your mind or felt you have already lost it... we are here to listen and offer advise whenever we can. Of course, we are not medical professionals and we would be the first to tell you to check with your doctors first before doing or trying anything, but it helps to know you are not alone...

There are some other members from Canada....... perhaps they will post in the next couple of days...

Thinking of you....

Cheryl & Randy

Randy tx 12-14-99 AIH

Cheryl is his Living Liver Donor

Cleveland Clinic Foundation, Cleveland OH

Living Liver Donor Surgery #2 at CCF

Posted January 11, 2002 · January 11, 2002

Hey ,

Just ask away with the questions....someone usually can give you an answer or steer to you to a place to find them.......

Three teenage girls in the house at once when they were growing up????? Dont know if I would have survived such a thing..... i had two boys and a girl all teens at once and that was enough by itself...

Cheryl & Randy

Posted January 11, 2002 · January 11, 2002

welcome to the group. It's a great group to help you with any questions that you have. We don't have all the answers but the advice that everyone gives is great. Ann CT [ ] A new member Hi everyone,My name is . I'm 44 years old married with 3 teens girls.I live in Canada. I have been diagnosed with autoimmune hepatits at the beginning of Otober 2000. This was confirmed with a biopsy of the liver.I have a subsential degree of fibrosis which is creating bridging and is associated with regenerative nodules (stage 4 fibrosis, cirrhosis), associated with quite active portal inflammation with piecemeal necrosis and obliteration of the limiting plate in many areas. To resume I have an established cirrhosis with evidence of ongoing inflammation of grade 2 or 3.My dr. immediately gave me prednisone 10 mg. and azathioprine (Immuran)50 mg. - My numbers got down during a period of 8 weeks with every 2nd weeks blood test confirmed it. Since the last week of December i'm down on the prednisone to 7.5 mg.I don't know anyone that has this sickness around my area. When I ask question about things like the shakes that never leaves me for about 2 months now or the sudden feeling of being so weak or the tears that come down for nothing, or the ache that comes from you don't know where and why, or the arthristis... I felt noone understood not even myself. Just reading the messages in my e-mail today I felt happy that I was'nt turning crazy LOL and other people had the shakes and the symptomes and everything. I have no idea who started the group but thank you.... I have questions concerning what happens to the cirrhoses when the numbers are down. I know it doesnt get better but i read somewhere that people with autoimmune hepatitis can developp cirrhoses,,, and sice mine is quite developp i wandered...... Well thank you all for listening to me... It just feels good and if someone has a answer I'd love to hear it...I send my hopes to all of you - have a great day no matter what comes along.....

Posted January 11, 2002 · January 11, 2002

In a message dated 1/11/02 10:17:03 AM Pacific Standard Time, bamrand@... writes:

If you figure out why the doctor told you not to eat sugar let me know. I've never heard of that and it sounds interesting.

While taking Prednisone, we are prone to diabetes, but I've never heard "don't eat sugar." We need a better diet than most people, and sugar is empty calories. Perhaps that's all that the doctor meant?

Harper

Posted January 11, 2002 · January 11, 2002

,

If you figure out why the doctor told you not to eat sugar let me know. I've never heard of that and it sounds interesting. The chat times are Tues, Thurs, and I think Sunday at 9:30pm Eastern time. My kids get up early so I am rarely on that late. I usually turn to a couch potato and then go to bed!!!! Hope you are feeling well.

Bethanne

Bordenuick <dwjam@...> wrote: Hi BethanneThanks for the welcome and for the information. Iwill check into this book you are suggesting. Thereis not much information on the internet sitesconcerning AIH with stage 4 cirrhose. I hope i'll getto know people that are living through it so i canhave a idea of what to expect. I read things and ihear other things from my doctor. And everyone elsehere don't seem to know much about all this. It isreally a confort to have found this group. I hope tohave a chance to chat with some members, but each timei go there there is nobody... Well i imagine i willsucceed at some point to chat with some people.I have ton of questions concerning infections of anykind (how it affects us) and should we or should wenot take any antibiotics? Why did my doctor told menot to eat any sugar that that may be dangerous for me? ...Anyhow.... i think i really needed to talk tosomeone..... Sorry if my notes are so long and myenglish so so.. Hope to talk to you again Take care HUGS - from Canada--- Bethanne <bamrand@...> wrote:> > Welcome ,> I'm sorry you are so far into it at such an early> stage. It sounds like alot of what you are feeling> could be from the prednisone, but not sure since you> weren't on a very high dosage. I can't answer many> questions about the cirrhosis but Palmer's> book Hepatitis and Liver Disease is an excellent> source for information. This group is also> excellent and I'm sure someone on here has an answer> for you. Welcome again and good luck. > Bethanne> dwjam <dwjam@...> wrote: Hi everyone,> My name is . I'm 44 years old married with 3> teens girls.> I live in Canada. I have been diagnosed with> autoimmune hepatits at > the beginning of Otober 2000. This was confirmed> with a biopsy of > the liver.I have a subsential degree of fibrosis> which is creating > bridging and is associated with regenerative nodules> (stage 4 > fibrosis, cirrhosis), associated with quite active> portal > inflammation with piecemeal necrosis and> obliteration of the limiting > plate in many areas. To resume I have an> established cirrhosis with > evidence of ongoing inflammation of grade 2 or 3.> My dr. immediately gave me prednisone 10 mg. and> azathioprine > (Immuran)50 mg. - My numbers got down during a> period of 8 weeks > with every 2nd weeks blood test confirmed it. Since> the last week of > December i'm down on the prednisone to 7.5 mg.> I don't know anyone that has this sickness around my> area. When I > ask question about things like the shakes that never> leaves me for > about 2 months now or the sudden feeling of being so> weak or the > tears that come down for nothing, or the ache that> comes from you > don't know where and why, or the arthristis... I> felt noone > understood not even myself. > Just reading the messages in my e-mail today I felt> happy that I > was'nt turning crazy LOL and other people had the> shakes and the > symptomes and everything. I have no idea who> started the group but > thank you.... I have questions concerning what> happens to the > cirrhoses when the numbers are down. I know it> doesnt get better but > i read somewhere that people with autoimmune> hepatitis can developp > cirrhoses,,, and sice mine is quite developp i> wandered...... Well > thank you all for listening to me... It just feels> good and if > someone has a answer I'd love to hear it...> I send my hopes to all of you - have a great day no> matter what comes > along..... > > > >

Posted January 11, 2002 · January 11, 2002

That's a good thought. It could be the reason. I'd be in trouble if I couldn't eat sugar!!!

Thanks

Bethanne

flatcat9@... wrote: In a message dated 1/11/02 10:17:03 AM Pacific Standard Time, bamrand@... writes:

If you figure out why the doctor told you not to eat sugar let me know. I've never heard of that and it sounds interesting. While taking Prednisone, we are prone to diabetes, but I've never heard "don't eat sugar." We need a better diet than most people, and sugar is empty calories. Perhaps that's all that the doctor meant? Harper

Posted January 11, 2002 · January 11, 2002

in Canada, I thought I'd sent the message below to you yesterday. I found it in my "Send Later" file.

In a message dated 1/10/02 12:52:02 PM Pacific Standard Time, dwjam@... writes:

Hi everyone,

My name is . I'm 44 years old married with 3 teens girls.

I live in Canada. I have been diagnosed with autoimmune hepatits at the beginning of Otober 2000. This was confirmed with a biopsy of the liver.I have a subsential degree of fibrosis which is creating bridging and is associated with regenerative nodules (stage 4 fibrosis, cirrhosis), associated with quite active portal inflammation with piecemeal necrosis and obliteration of the limiting plate in many areas. To resume I have an established cirrhosis with evidence of ongoing inflammation of grade 2 or 3.

My dr. immediately gave me prednisone 10 mg. and azathioprine (Immuran)50 mg. - My numbers got down during a period of 8 weeks with every 2nd weeks blood test confirmed it. Since the last week of December i'm down on the prednisone to 7.5 mg.

I don't know anyone that has this sickness around my area. When I ask question about things like the shakes that never leaves me for about 2 months now or the sudden feeling of being so weak or the tears that come down for nothing, or the ache that comes from you don't know where and why, or the arthristis... I felt noone understood not even myself.

Just reading the messages in my e-mail today I felt happy that I was'nt turning crazy LOL and other people had the shakes and the symptomes and everything. I have no idea who started the group but thank you.... I have questions concerning what happens to the cirrhoses when the numbers are down. I know it doesnt get better but i read somewhere that people with autoimmune hepatitis can developp cirrhoses,,, and sice mine is quite developp i wandered...... Well thank you all for listening to me... It just feels good and if someone has a answer I'd love to hear it...

I send my hopes to all of you - have a great day no matter what comes along.....

in Canada (we have another ), this must be very difficult for you. You are probably familiar with everything I have to say, below, but I'll put it down, anyway. For us, repetition is sometimes useful. Keep in mind that I don't have any medical training; I'm just someone with AIH who reads what I can find. I'm glad you found us; few people here have any medical training, but we learn as we go, and we can tell you what we've experienced.

First, most people start Prednisone at a much higher dose than 10 mg -- you did say 10 mg to start, didn't you? However, if the low dose works for your situation, that's great. (It took me about six months, to get down to 10 mg/d from 80 mg/d Prednisone, and I continue at 100 mg Imuran after a year and a half.) It's good that you have access to your biopsy report and that you're getting frequent monitoring through blood tests.

Have you bought a standard liver reference book? Among others, I have Palmer's Guide to Hepatitis and Liver Disease and a similar book by G. Worman. They are well under $20 through your local bookstore, Amazon.com, or Palmer's website.

You are very much an advantage if you can get a doctor (preferably a hepatologist or gastroenterologist) who is familiar with AIH and its treatment. Most doctors aren't. I don't know how much flexibility Canada gives you on choosing your doctor. Push for the very best; it matters a great deal.

According to Palmer, "One of the most common, relentless, and debilitating symptoms among people with liver disease is fatigue. . ."

"Fatigue is a symptom characterized by a diminished ability to exert oneself, usually associated with a feeling of being tired, bored, weak, and/or irritable. Fatigue is probably the most common and debilitating symptom of liver disease. It is universal to all types and stages of liver diseases. . . . Fatigue can occur at any time of day, but it is most common in the morning. Often, little more than an hour after awakening, a person may already feel the exhaustion of having worked an entire day. . . Fatigue can be caused by the liver disease iteself or from disorders -- such as thyroid disease or vitamin deficiencies -- often associated with liver disease."

Palmer also says "During the acute stages of liver disease, a person may experience symptoms similar to those of the flu . . . These symptoms may last anywhere from several days to several weeks before they are completely resolved. In a person who has chronic liver disease, these symptoms are not as common, but may occur intermittently throughout the course of the disase. If any of these flu-like symptoms are constant in a person with conric liver disease, a cause other than a liver problem should be investigated . . ."

From what I read, what one needs to do is:

o First, make sure nothing else is causing the fatigue (anemia, etc.) o Exercise as much as you are able

o Eat well (you need especially well with liver disease, partly because the liver doesn't process nutrients properly)

o Reduce stress

o Rest. Give in and take naps in the day; they pay off.

o Make sure your family knows you need help.

o If you feel depressed, as most people with AIH seem to do, talk to your doctor about the many types of antidepressants available. Some work for some people, some for others. Keep trying until you find the right one for you.

AIH is a progressive disease. The goal of the treatment is to slow the progress of the disease and to allow us to live rewarding, useful lives. A study done in England showed that most people with AIH who receive standard therapy live normal lifespans. Yes, as AIH progresses it may cause cirrhosis. If the cirrhosis becomes extreme, a transplant is considered. Several people in the group have had transplants (including live transplants between a husband and wife and a mother and daughter.) I have a friend with AIH who's not in the group who had a liver transplant a year ago; she's back at work and feeling well and looking great.

Posted January 12, 2004 · January 12, 2004

Vailbhav,

I know exactly what your going through. Epilepsy doesnt run in my family either.

In 1999 I went up north because I though I was interested in conservation. I was

wrong. My seizures always seemed to happen at night, when im woken up suddenly.

Were you scared? I think the worse part having this is the fact that I cant

drive and how scared I feel after I have one. There not fun. What im trieing to

say is I know how you feel. Right know your angry and you dont understand why

this is happening to you. You want it to go away. You also dont want people to

look at you differently. If you ever need anything im here for you. Ive had

epilepsy for the past 4 years of my life. I used to be really angry especially

with my parents. I was really happy when all my seizures started to happen, and

they came and they took me home, I hated it. I took all my anger out on my

sisters, etc. This group will get you through what your going through. Righ know

im taking tegretrol, it really works for me.

Your Friend,

Katrina

vaibhav.tyagi@... wrote:

Hi,

I read more about you guys in the latest web search. I am residing in India

and also facing this problem for last 10 years. Nobody in my family has had

epilepsy before, it just started with me. Initially, i used to face this

while sleeping, now it can happen to me anywhere and also the frequency has

increased. Now, I work for a multinational firm and quiet worried.

When it happenes to me, i just loose my control and just collapse on the

floor whereever i am.

It looks quiet embrassing to me as i work on a professional ground and have

lot of credibility towards my customer-base job.

I have gone through with various test, my blood test, EEG and various

appointments with nuerosurgeon, however it still doen't work for me. Last

week, i was attacked twice. One when i was sitting in a nearby resturant

and second time when i was sitting with my mom.

Right now I am taking medicine like " Eptoin, Frisium 10 mg and one more

drug. Please suggest me what should i do?

I want to get rid of it. What should i do to live a peaceful life? What

kind of changes i have to take in my life to make it better and tension

free? Is it 100% curable? What kind of life one has to live to make it in

control? Which drug is an effective one in such circumstances?

Do write me soon, I am waiting for your reply.

regards,

Vaibhav Tyagi

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Posted January 12, 2004 · January 12, 2004

Vaibhav,

Have you been tested for Toxoplasma gondii? India has a very high

infection rate for this parasite which is now being viewed as a possible

cause of what is known as cryptogenic (unknown) epilepsy. In a study

done by Yazar, et al, published in the journal Seizure (2003

Mar;12(2):107-9), they found that the 50 patients with cryptogenic

epilepsy had a 52% infection rate versus 18% for the 50 healthy

volunteers. This is a staggering correlation and one that my research

institute is beginning to review here in the U.S.. I will be posting

articles about this subject on my website about the issue. We tested my

daughter this past weekend and will report the results as soon as we

know.

In health,

Mark Schauss

www.carbonbased.com

[ ] A new member

Hi,

I read more about you guys in the latest web search. I am residing in

India and also facing this problem for last 10 years. Nobody in my

family has had epilepsy before, it just started with me. Initially, i

used to face this while sleeping, now it can happen to me anywhere and

also the frequency has increased. Now, I work for a multinational firm

and quiet worried. When it happenes to me, i just loose my control and

just collapse on the floor whereever i am. It looks quiet embrassing to

me as i work on a professional ground and have lot of credibility

towards my customer-base job.

I have gone through with various test, my blood test, EEG and various

appointments with nuerosurgeon, however it still doen't work for me.

Last week, i was attacked twice. One when i was sitting in a nearby

resturant and second time when i was sitting with my mom. Right now I

am taking medicine like " Eptoin, Frisium 10 mg and one more drug. Please

suggest me what should i do?

I want to get rid of it. What should i do to live a peaceful life? What

kind of changes i have to take in my life to make it better and tension

free? Is it 100% curable? What kind of life one has to live to make it

in control? Which drug is an effective one in such circumstances?

Do write me soon, I am waiting for your reply.

regards,

Vaibhav Tyagi

Whilst this email has been checked for all known viruses, recipients

should undertake their own virus checking as Xansa will not accept any

liability whatsoever.

This email and any files transmitted with it are confidential and

protected by client privilege. It is solely for the use of the intended

recipient. Please delete it and notify the sender if you have received

it in error. Unauthorised use is prohibited.

Any opinions expressed in this email are those of the individual and not

necessarily the organisation.

Xansa, Registered Office: 420 Thames Valley Park Drive,

Thames Valley Park, Reading, RG6 1PU, UK.

Registered in England No.1000954.

t +44 (0)8702 416181

w www.xansa.com

Posted January 12, 2004 · January 12, 2004

Hi Mark,

Thanks for your knowledge. Well, i am not very sure whether i have been

tested with this parasite. Yes, you are very true now a days this is very

common in India.

regards,

Vaibhav Tyagi

" Mark Schauss "

<schauss@carbonb

< >

ased.com> cc:

Subject: RE: [ ] A

new member

01/12/2004 11:08

PM

Please respond

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