New member

[Guest guest]

Hi PJ,

Welcome to the group. I know exactly how you feel finding this

place,,,the same way I did right after I was diagnosed in November.

This is a place where everyone will freely share their experiences,

feelings, opinions and advice. And you will have more shoulders to

cry on and lean on than you ever thought possible...and know they

do understand what you are going thru.... and talk about a

cheering section!!!

You will find a lot of answers to your questions here...either from

the members themselves or by them pointing you in the right direction.

I think this is the best source....like a clearinghouse of

information for AIH. Anytime you need something..just post. Tell us

something about yourself too...your first name? where are you from?

I am from North Carolina..just diagnosed in November...currently

taking 30mg pred and 50 mg 6MP....still trying to get the enzymes down

where they should be!!

Hope to hear from you again soon.

nne

> Hi Everyone!

>

> I am so glad that I found your support group! I am 33 years

old and

> have been recently diagnosed with Autoimmune Hepatitis as of two

weeks ago.

> My doctor told me that I could be diagnosed with worse conditions,

but that

> does not alleviate the intense fear that I have been feeling. As of

> yesterday, I began treatment by taking Imuran 50mg, and Prednisone

10mg,

> twice a day .

> On top of being diagnosed with this, I am also in my last

semester of

> Nursing School. While searching through all of my nursing books, I

could not

> believe that they had absolutely no information regarding AIH. I

was able to

> find out the majority of info from the internet (luckily) and from

my GI

> doctor. I am so scared! I am not sure if it is because I do not

know what

> the future holds for me as far as it getting better or worse, or if

I am

> afraid of what the medication side effects can potentially do. I

have been

> working towards earning my degree in Nursing for the past six years,

and

> quite frankly, I don't want to be a patient, I want to " take care "

of

> patients! I've been having quite the pity party for the past couple

weeks.

> I am so lucky that I have amazing support from my husband,

family,

> friends, and most of all, the joy that my 9 year old daughter gives

to me.

> She knows how to brighten my day, even when I am at my lowest point.

Now I

> have found this support group. As I read the e-mails that have been

sent to

> me I know that I am not alone. Without everyone I would be lost! If

anyone

> would like to shed a little more light on this subject as far as the

side

> effects, emotions, fear, and experiences, please share them with me.

I would

> be sincerely grateful.

> Thanks for letting me share!

[Guest guest]

Welcome, I am Lori and I was diagnosed in July 1996 with AIH but I had advanced Cirrhosis and was put on the transplant list in Oct. 1996 and was transplanted on 3~11~97, so it was 4 years ago Sunday that I had my transplant. Hopefully you can maintain on the meds you are taking, and even though there are side effects, it beats not being around!!

Take care

Lori C.

AIH Post transplant 3~11~97

[ ] New MemberHi Everyone! I am so glad that I found your support group! I am 33 years old and have been recently diagnosed with Autoimmune Hepatitis as of two weeks ago. My doctor told me that I could be diagnosed with worse conditions, but that does not alleviate the intense fear that I have been feeling. As of yesterday, I began treatment by taking Imuran 50mg, and Prednisone 10mg, twice a day . On top of being diagnosed with this, I am also in my last semester of Nursing School. While searching through all of my nursing books, I could not believe that they had absolutely no information regarding AIH. I was able to find out the majority of info from the internet (luckily) and from my GI doctor. I am so scared! I am not sure if it is because I do not know what the future holds for me as far as it getting better or worse, or if I am afraid of what the medication side effects can potentially do. I have been working towards earning my degree in Nursing for the past six years, and quite frankly, I don't want to be a patient, I want to " take care " of patients! I've been having quite the pity party for the past couple weeks. I am so lucky that I have amazing support from my husband, family, friends, and most of all, the joy that my 9 year old daughter gives to me. She knows how to brighten my day, even when I am at my lowest point. Now I have found this support group. As I read the e-mails that have been sent to me I know that I am not alone. Without everyone I would be lost! If anyone would like to shed a little more light on this subject as far as the side effects, emotions, fear, and experiences, please share them with me. I would be sincerely grateful. Thanks for letting me share!

[Guest guest]

Hi,

I can believe that you were unable to find info in your nursing books about AIH, the internet is a lot easy place to find info on it, but not always that good and easy to understand, thats why I've set up my own website http://AutoImmuneHepatitis.HomeStead.com. It has loads of info on it, Que's Answers, drugs and side effects, research and other links.

You say that your on 10mg of pred, I wouldn't worry to much about side effects as it is a fairly low dosage.

Anyway you've found the best people to share thoughts and talk to.

Join the AIH mailing list!

And get informed of new developments and up-dates

Just enter your email address below,

then click the 'Join List' button:

Take care

Matt Hastingshttp://AutoImmuneHepatitis.HomeStead.com.

======================================

--- Pjbignose2@... wrote:

> Hi Everyone!

> > I am so glad that I found your support group! > I am 33 years old and > have been recently diagnosed with Autoimmune

> Hepatitis as of two weeks ago. > My doctor told me that I could be diagnosed with

> worse conditions, but that > does not alleviate the intense fear that I have been

> feeling. As of > yesterday, I began treatment by taking Imuran 50mg,

> and Prednisone 10mg, > twice a day . > On top of being diagnosed with this, I am also

> in my last semester of > Nursing School. While searching through all of my

> nursing books, I could not > believe that they had absolutely no information

> regarding AIH. I was able to > find out the majority of info from the internet

> (luckily) and from my GI > doctor. I am so scared! I am not sure if it is

> because I do not know what > the future holds for me as far as it getting better

> or worse, or if I am > afraid of what the medication side effects can

> potentially do. I have been > working towards earning my degree in Nursing for the

> past six years, and > quite frankly, I don't want to be a patient, I want

> to "take care" of > patients! I've been having quite the pity party for

> the past couple weeks.

> I am so lucky that I have amazing support

> from my husband, family, > friends, and most of all, the joy that my 9 year old

> daughter gives to me. > She knows how to brighten my day, even when I am at

> my lowest point. Now I > have found this support group. As I read the

> e-mails that have been sent to > me I know that I am not alone. Without everyone I

> would be lost! If anyone > would like to shed a little more light on this

> subject as far as the side > effects, emotions, fear, and experiences, please

> share them with me. I would > be sincerely grateful. > Thanks for

> letting me share!

>

[Guest guest]

I was diagnosed in January of this year with cirrhosis of the liver due to

AIH. Like you I have been extremely scared, but since joining this group and

reading all of the postings, I have a much better outlook on things. The

information other members have provided, along with the prayers, words of

encouragement, and the ability to just " let it all out " , have been invaluable

to me. This is actually the first time I have written anything, and saw this

as a perfect time to say " THANKS " to all you wonderful people out there!

AIH 01/01

IL

[Guest guest]

Hi ,

Welcome. Just remember that no question is to small or any problem to big

to post and ask for support.

Have a great day.

April

Re: [ ] New Member

> I was diagnosed in January of this year with cirrhosis of the liver due to

> AIH. Like you I have been extremely scared, but since joining this group

and

> reading all of the postings, I have a much better outlook on things. The

> information other members have provided, along with the prayers, words of

> encouragement, and the ability to just " let it all out " , have been

invaluable

> to me. This is actually the first time I have written anything, and saw

this

> as a perfect time to say " THANKS " to all you wonderful people out there!

>

>

> AIH 01/01

> IL

>

>

>

[Guest guest]

Hello Cela and welcome I am also new here. Welcome Welcome!!!!

Kari

" The greatest mistake you can make in life is to be continually fearing you

will make one. "

-- Elbert Hubbard, 1856-1915

[ ] new member

> hi, all. i am new to this group. i have just been diagnosed with

> chronic hepatitis due to autoimmune liver disease. my doc says my

> case is relatively mild, but i'm still pretty scared. i mostly feel

> fatigue, sometimes no appetite. thanks for having the FAQ section, i

> was able to learn quite a bit. look forward to some discussions.

>

> take care, cela

>

>

>

>

[Guest guest]

Hi cela, welcome to the group. I am relatively new here also and this

group is the best thing that has happened to me. Everyone is so friendly

and will answer any question you have I have had AIH for 2 yrs. now and

didn't know anything about it until now. Sooo, just ask away.

again welcome

cherry guynee

[ ] new member

> hi, all. i am new to this group. i have just been diagnosed with

> chronic hepatitis due to autoimmune liver disease. my doc says my

> case is relatively mild, but i'm still pretty scared. i mostly feel

> fatigue, sometimes no appetite. thanks for having the FAQ section, i

> was able to learn quite a bit. look forward to some discussions.

>

> take care, cela

>

>

>

>

[Guest guest]

Welcome, Cela. You will find a wonderful support system here with people

that are sincerely caring. I was diagnosed with AIH (autoimmune hepatitis)

in January of this year, and like you, was quited scared. The information I

have gotten through this support group has been a lifesaver.

AIH (01/01)

IL

[Guest guest]

Cela,

Welcome. I am sure I will not be the only one to tell you that this

is a great place..to get information, support, and the most

understanding ears anywhere. If you have a question about

anything...ask. Someone here either will have been there, done that,

or knows where the information is...or will even (Jerry) find the

information for you and pass it on to you. If you need to vent, this

is the place; need some encouragement, you will find it here. Once

again, welcome...

nne

> hi, all. i am new to this group. i have just been diagnosed with

> chronic hepatitis due to autoimmune liver disease. my doc says my

> case is relatively mild, but i'm still pretty scared. i mostly feel

> fatigue, sometimes no appetite. thanks for having the FAQ section, i

> was able to learn quite a bit. look forward to some discussions.

>

> take care, cela

[Guest guest]

HI CELA AND KARI,

I AM ALSO NEW, DIAGNOSED IN 2/01 WITH AIH AND PBC. WE'LL LEARN

TOGETHER.

WELCOME.

NELL

[Guest guest]

Cela...

Welcome to our group...you will get all kinds of good information and make some new good friends...

I am a mom here...I have an 18 yr old son who has Chrohns (since he was 9) and Rheumatoid Arthritis, Vasculitis and AIH and PSC...which is another liver disease....I am on a couple of different groups on the computer and find it hard to keep up...with all the e-mail...but I try....

Again welcome...

Luanne Ty's mom

[Guest guest]

Hello Nell thanks for the welcome!!

Kari

Re: [ ] new member

> HI CELA AND KARI,

> I AM ALSO NEW, DIAGNOSED IN 2/01 WITH AIH AND PBC. WE'LL LEARN

> TOGETHER.

> WELCOME.

> NELL

>

>

>

[Guest guest]

There are many of us out here. I for one you can

chat with anytime. I also have constant pain due to

cervical damage. My surgeon wants to operate any day now.

I can relate to every thing you said except having

kids in college, my oldest is a sophmore in HS. You

will find that there are so many supportive people out

here. It is a very understand compssionate group of

people. my e-mail is ms_sweetie_29@... feel free to

e-mail me anytime. I can't work either and haven't since

9/20/1999 and i to applied for ss, but the process here in

Ca. takes up to 4 months, not sure where you are

from. I got a question for you, is your Dr. from an HMO

or private? and have you gotten a second opinion? I

was told by an HMO not a good surgegical candidate,

but an out side special in spinal disorders not only

said absolutely need sergery but determined I have a

rare spinal disease. I too have been suicidal. Went to

a locked facility for a week I was so derpessed,

but i have the support of my family, also no friends

to speak of right now, and a great support system

here. I will keep you in my prayers. if you have

messenger or aol, or even icg, and ever want to chat i have

all 3 and would be honored to be your friend.<br>God

Bless,<br>sweetie

[Guest guest]

Hi Kat,

Sorry you have AIH, but glad you found US!

I can't tell you how you are going to feel about having AIH from here on out,

but I can describe the various stages I went through.

At first I felt fear. Mostly fear about the unknown, and fear that my life

had suddenly changed.

Next I was consumed with finding out all I could about autoimmune liver

disease. It seemed too, that it almost consumed my every waking moment. I

am sure that I drove people nuts around me, because that is all I could talk

about and think about.

Then I decided to fight this damn illness, and do everything in my power to

help my liver and slow the disease process. The biggest things for me were

to eat right, take my medication, stay away from anything that was not " liver

friendly. " AND TRY TO CONTROL MY STRESS.

Time has been a big helper. I am a lot more relaxed about my " my condition "

now. I don't feel the need to talk about it all the time, and that feels

good and normal.

It's almost like going through the stages of loss.

Everybodies experience in coping with a cronic disease is going to be

different. Good luck, I hope your meds kick in and your liver responds well.

[Guest guest]

Kat,

Welcome to the group. You have definitely come to the right place. You will

find very knowledgeable, understanding, caring people here. I was diagnosed

in January of this year with AIH, and like you, was shocked. I had never

heard of such a thing before. Besides the AIH I have cirrhosis, autoimmune

cholangitis, portal hypertension, hypothyroidism, migraines, anemia, and an

enlarged spleen to go along with the muscle/joint pain & ever present

fatigue. I currently take 20mg Prednisone (down from 60mg), 50mg Imuran,

500mg Urso, .175mg Synthroid, 30mg Prevacid, 40mg Lasix, Calcium plus Vitamin

D, and ferrous sulfate (whew---what a list!!) daily. Since I am new to all

of this also, the best advice I can give is to educate yourself, keep a

positive attitude, and reduce as much stress from your life as possible. I

continue to work full time, but will admit that some days it takes all the

energy I have to drive myself home at the end of the day. I work for a

company that has been extremely understanding throughout all of this, and

this helps keep things " normal " for me.

Everyone reacts differently and hopefully once your medications take hold you

will start to feel a bit " normal " again.

Don't hesitate to contact the group with any questions and/or concerns.

Someone here will respond with advice, an article that pertains to the

subject, or links to web sites that will have your answers.

Keep in touch.

[Guest guest]

Hi Kat,

Welcome to the group! I'm 45, a seasoned RN also, widow, with 2 teenagers. I was diagnosed AIH Jan 2000 after an esophageal bleed brought me to the ER. I ignored the symptoms for a long time and just attributed them to "stress", but I was getting so fatigued that I had to take my lunch hour as nap time...my family doc transfused 2 units PRBC's and prescribed Prilosec (for gastric ulcers)...I mentioned the pedal (ankle and feet) edema and the increase in abdominal girth (ascites) and he said "you are fluid overloaded, take this lasix and potassium and "call me in the morning". I started having the joint and muscle pains, nausea, loss of appetite and a general feeling of malaise (unwellness). When I finally sought the attention of a GI, he confirmed esophageal varices and banded 3 of them, put me on betablockers (corgard), imuran 100mg, pred 40 mg...when I was still not getting better, he said I was depressed. I went to the women's center for a while, but finally had to acquiesce to Zoloft (it has helped). I've been weaning down pred to 10 mg, but have had 2 massive GI bleeds (ICU visits) and more than 10 transfusions. At present, I am listed for transplant at Univ of Miami (after another complication

of hepatic encephalopathy). I am feeling pretty good today, nearly normal, and I am thankful to all who have prayed for me to get here.

I don't mean to frighten you with too much information about myself, but I wanted you to know that you are not alone....many folks with AIH maintain normal LFT's and will survive a normal lifespan (though medications may always be needed). AIH is a chronic disease and manifests in different ways to different people. You MUST have a doctor that you trust and knows about AIH. Please use the resources from this site to learn as much as you can about the disease.

I added you to my prayer list as I'm sure this entire group has also.

God bless you and stay in touch,

[Guest guest]

Hi Dagelo

I am . I am 48, a medical claims auditor out on disabiltity. I was diagnosed with end-stage liver disease in December of 2000. I am in the process of getting on the waiting list at UCI here in Orange, California. I am going through all the testing,echo, stress echo, pulmonary functions, blood work, and an EEG and liver ultra sound. When my nuerologist receives the results of the EEG she will clear me for surgery too. They have considered me to be a good candidate for transplant. I have hepatic encephalopathy, and have had 4 episodes of eshophogeal varicies. I have been banded 3x's and received sclerotherapy once. I have stage II varicies, whatever that means. I also take beta blockers (propanolol). I, too suffer from depression and manic depression (bi-polar disorder) and PTSD (post tramatic stress syndrome) I am on seroquel and Celexa for my depression. There are some wondeful people here in the Liver Support Group and anything you want to know there seems to be someone in the group that knows the answer. They are more informative than my doctors because they have BTDT. I have read some of your posts, but have not intriduced myself personally. I am new to the group also since March.

Sincerely

in Tustin, CA

Re: [ ] New member

Hi Kat,

Welcome to the group! I'm 45, a seasoned RN also, widow, with 2 teenagers. I was diagnosed AIH Jan 2000 after an esophageal bleed brought me to the ER. I ignored the symptoms for a long time and just attributed them to "stress", but I was getting so fatigued that I had to take my lunch hour as nap time...my family doc transfused 2 units PRBC's and prescribed Prilosec (for gastric ulcers)...I mentioned the pedal (ankle and feet) edema and the increase in abdominal girth (ascites) and he said "you are fluid overloaded, take this lasix and potassium and "call me in the morning". I started having the joint and muscle pains, nausea, loss of appetite and a general feeling of malaise (unwellness). When I finally sought the attention of a GI, he confirmed esophageal varices and banded 3 of them, put me on betablockers (corgard), imuran 100mg, pred 40 mg...when I was still not getting better, he said I was depressed. I went to the women's center for a while, but finally had to acquiesce to Zoloft (it has helped). I've been weaning down pred to 10 mg, but have had 2 massive GI bleeds (ICU visits) and more than 10 transfusions. At present, I am listed for transplant at Univ of Miami (after another complication

of hepatic encephalopathy). I am feeling pretty good today, nearly normal, and I am thankful to all who have prayed for me to get here.

I don't mean to frighten you with too much information about myself, but I wanted you to know that you are not alone....many folks with AIH maintain normal LFT's and will survive a normal lifespan (though medications may always be needed). AIH is a chronic disease and manifests in different ways to different people. You MUST have a doctor that you trust and knows about AIH. Please use the resources from this site to learn as much as you can about the disease.

I added you to my prayer list as I'm sure this entire group has also.

God bless you and stay in touch,

[Guest guest]

Hi ,

Go join the gallstones list, even the bowel cleanse list, at , and read

the archives, especially the liver/gallbladder flush in the gallstones

archives. Its harmless and so inspiring. I did the flush myself even though

I dont present with gallbladder probs and flushed out many stones. Im about

to do my next flush.

Kate

[Guest guest]

Carol, Hi! nice to hear from you, we are all in the same boat, some are

better than others and we have our own theory's, of what is working for each

of us. right now with summer still hanging around there will be more people

on the site the colder it gets, if we can help in any way please let us know,

and possibly you can help us also. Gods Blessings to everyone! Mog

[Guest guest]

Hello Carol,

You've come to the right place for help and support, this is a WONDERFUL

group of people that are always here for ya. Please feel free to post anytime

you have a question....no doubt, one of us, can help ya or at least lead ya

down the right path.

Wishing You Good Health,

Angie

P.S.

I've read Job myself.....good book from the best book...

[Guest guest]

Hi Carol: write your story or forward it to Tripp at

ktripp@...

She is cured of Candidia. her story is great.

>Hi. I've just joined this list and thought it would be appropriate to

>introduce myself.

>

>I have fought and won the candida battle before. I am an allegy

>sufferer and had terrible eczema since I was a baby. About 6 years

>ago, a woman from my bible study came up to me, looked at my hands and

>said, " you need to see my doctor about candida " . I thought she was

>nuts, but I did and it changed my life. Die off was terrible. I

>ended up in the the emergency room one night w/ blisters all over my

>legs that were itching like crazy and oozing ( and of course they

>wanted to treat it w/ cortizone and antibiotic)...I finally realized

>there was nothing anyone could do for it,and took benedryl for 3 days

>and read a lot of Job. After staying the course with diet, and

>nystatin, I have been eczema free for the last 5 years.

>

>Now I need to do it again, I think. I have gotten lazy with my diet

>and my weight has gone back up, and I crave the sugar. I am 46 yrs.

>old and have been experiencing perimenopausal symptom. I went to a

>holistic doc for a short time (had to discontinue because of insurance

>woes), and was told that I am borderline hypoglycemic and hypothyroid.

>I am also on Weight Watchers right now, but not having much success

>with the weight loss. I need to do this again, I think. The last

>time, there were very few people around to ask questions of and get

>support from. BUT I am hoping that this list is for that purpose.

>I'll read and watch for a while, and I'm not quite ready to commit to

>doing this yet. I know I must, but I also know from experience, that

>I'd better be ready NOT to cheat, because the consequences are severe!

>Thanks.

>Carol

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

HI Carol!

Take a seat and make yourself comfy....we are all good friends here! We are

all in the same boat!

moons

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.273 / Virus Database: 143 - Release Date: 8/16/2001

[Guest guest]

Molly:

Good Luck! I work in the medical field and I found that when I started

asking my GI questions about AIH he told me it was too complicatied to

explain. I found out more from the internet and from this support group.

Gloria

AIH 9/01

>From: MFaulk3@...

>Reply-

>

>Subject: [ ] New Member

>Date: Mon, 29 Oct 2001 03:00:30 -0000

>

>It has taken me awhile to find a support group regarding AIH and I am

>thrilled to find this one! :-) As an RN of 20 years and currently a

>nurse practitioner student, I have recently been blind-sided by upper

>right quadrant pain and elevated ALT and AST levels as well as pos

>ANA for anti-liver antibodies. You would think it would be easy for

>me to find out what is going on with my body and talk it over in a

>thorough manner with my GI, but it has been a rough go so far. I

>would like to know how folks found a doctor they felt confident in,

>and if there is a place where those GI docs that specialize in AIH

>are listed? I am in Albuquerque, New Mexico. I am going to see my

>primary care doc next week with a list of questions, and I want a

>second opinion. Any other suggestions as to what I need to ask? Thank

>you in advance

>Molly

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

In a message dated 10/28/01 7:02:51 PM Pacific Standard Time, MFaulk3@... writes:

It has taken me awhile to find a support group regarding AIH and I am thrilled to find this one! :-) As an RN of 20 years and currently a nurse practitioner student, I have recently been blind-sided by upper right quadrant pain and elevated ALT and AST levels as well as pos ANA for anti-liver antibodies.

We're glad to hear from you, Molly. I think there are some other people here from New Mexico. As a starting point, pick up Palmer's Guide to Liver Disease, at a local bookstore, on Amazon, or on her website.

Harper

[Guest guest]

Hi a,

Welcome to the group. There is no age limit! I just

wanted to say I understand about people not

understanding about thyroid disease. It's hard for

people to understand when you may not LOOK ill.

However, you do have a doctor's diagnosis. Maybe the

doctor can give you some literature about thyroid

disease for your parents to read, or he would talk to

them if they went with you to an appointment.

www.thyroid.about.com is full of information too, but

I thought coming from a live doctor they might accept

it better. Good luck!

I was diagnosed with Hashi's and I

> have been having

> a real hard time with it. My parents don't

> understand and they yell

> at me alot.

__________________________________________________