autoimmune hepatitis

[Guest guest]

Hi Terry,

My autoimmune hepatitis has been in remission since I started iv abx for the

Lyme. I'm off the prednisone, and my immuran has been reduced to 25 mg from

50. My liver counts have been raising slightly. I'm really keeping my

fingers crossed that the hepatitis will not return. I will keep you in my

prayers.

From: rivrfolk@...

Thanks so much for th e support, I can't believe that someone else on tlhis

board also has hepatitis. i am trying a trial of prednisone and currently

off antibiotics. then will do a luat to see where the lyme is at. How

accurate is the luat anyway, does anyone know. My hepatologist is somewhat

open minded but is not sold that I had lyme in the first place just another

autoimmune problem which i think was triggered by

the #$@!@#$tick in my head 10 years ago!! sorry, had to vent. i can't

believe burrascano is being investigated. what a shocker when i came back on

the board. its been a tough week for everyone it seems. it has to get

better. this too shall pass i tell myself.

terry in georgia

lymie with autoimmune hepatitis

[Guest guest]

Hi all,

Thought I'd forward this letter, has anyone ever heard about these doctors he

recommended? It's a ways to drive, but I may have to do it.

(AIH)

[Guest guest]

:

Dr. Schiff is a colleague of my Dr. (Dr. Raj Reddy) at the University of Miami.

I feel that I am getting very good care with them. I have also heard of the

Gainesville doctor.

Good luck!!

Warmly,

[Guest guest]

Here is the info on autoimmune hepatitis!

Lori C.

[ ] Autoimmune Hepatitis

>

> <A HREF= " http://cpmcnet.columbia.edu/dept/gi/autoimmune.html " >Click here:

>Autoimmune Hepatitis</A>

>http://cpmcnet.columbia.edu/dept/gi/autoimmune.html

> Autoimmune

Hepatitis

>By J. Worman, M. D.

>Autoimmune hepatitis is a condition in which the patient's own immune

systems

>attacks the liver causing inflammation and liver cell death. The condition

is

>chronic and progressive. Although the disease is chronic, many patients

with

>autoimmune hepatitis present acutely ill with jaundice, fever and sometimes

>symptoms of severe hepatic dysfunction, a picture that resembles acute

>hepatitis.

>Autoimmune hepatitis usually occurs in women (70 %) between the ages of 15

>and 40. Although the term " lupoid " hepatitis was originally used to

describe

>this disease, patients with systemic lupus erythematosus do not have an

>increased incidence of autoimmune hepatitis and the two diseases are

distint

>entities. Patients usually present with evidence of moderate to severe

>hepatitis with elevated serum ALT and AST activities in the setting of

normal

>to marginally elevated alkaline phosphatase and

gamma-glutamyltranspeptidase

>activities. The patient will sometimes present with jaundice, fever and

right

>upper quadrant pain and occasionally systemic symptoms such as arthralgias,

>myalgias, polyserositits and thrombocytopenia. Some patients will present

>with mild liver dysfunction and have only laboratory abnormalities as their

>initial presentation. Others will present with severe hepatic

>dysfunction...ETC...

> for rest of page go to the site....

>

>

[Guest guest]

Hi. Thanks for writing. My daughter is 12 and was just diagnosed,

so it is nice to hear from someone who's ten years out and happy and

fertile. I worry so much about her future, in every way.

Crimmins, mother of , diagnosed with AIH February 2001

> hello everyone

>

> l have autoimmune hepatitis for the last 10years now.so its been

hard

> times when l first found out l was only 14yr old so it was very

hard

> to understand what l had.l have been on prednisone and imuran for

the

> past 10years. from high dose now l'm on 10gm of prednisone and 50gm

> of imuran.but now l'm healthy and l have a 2yr old girl.l was told

by

> my doctor that l will never have children but l prove him wrong.so

> now l'm happy things are going right for me.thank you

[Guest guest]

In a message dated 11/15/01 8:37:07 PM Pacific Standard Time, seafarer52@... writes:

Hi. My name is Ann and my doctor thought it might be a good idea for me to join a support group. Hope you don't mind.

Glad to hear from you. And glad (and amazed) to hear that you have a doctor who recognizes that one needs support, information!

Harper (AIH dx 5/00)

[Guest guest]

Welcome Ann,

This is a wonderful support group..... you can find out lots of good information about who people are managing their disease, new technology, ask any question you want, and one of the most important things... you can vent your frustrations and we understand.

Sorry you are ill and need us, but we are glad you found us!

Cheryl & Randy

[Guest guest]

In a message dated 11/15/01 8:36:59 PM Pacific Standard Time, seafarer52@... writes:

Hi. My name is Ann and my doctor thought it might be a good idea

for me to join a support group. Hope you don't mind

Welcome Ann....my name is Bert.--short for Bertha.

I have just joined this group a couple days ago and they are all great.....I vented a lot....and still do a little.... :-)

and so far no one has complained... :-) :-)

so feel free to tell all whats going on and ask lots of questions if you need to....I agree with Harper...it's GREAT that your doc. suggested you could benefit from support!!!!!!

I have learned soooooo.......much here in this group!!!

I was just DX by a doc. a month ago, haven't started treatment yet bec. of a move to another city....

I will be starting with a new doc....and hopefully get into seeing a GI soon. And have a biopsy done for better DX.

I am sorry to hear that you've had a rough time of it...but real glad you are taking your illness seriously now.....

and on a road to better health...

13 meds. huh????? I have seen that many people here are taking a lot of meds. I wonder if i will have to too.....?

it really sucks that meds. have side affects.....

will your ulcers heal with the other meds. and change in diet maybe????

I hear ya about fear.....we all have that, so please don't feel alone!!!!! You are absolutely right about the effort part of it.

Harper set me a little straight on that.... :-) :-)

I was feeling a little self pity in 1 e-mail or..2. :-) and she gave me some food for thought, actually everyone did....

I certaintly feel a lot of strenghth and wisdom here with this group and you will too....stay with us.....there is funny stuff to read too sometimes....laughter is a part of healing too i always say....

Best wishes to all....

Bert.

[Guest guest]

---

I've been reading messages and I find that I have a few

similarities. I've had a hysterectormy last year and I use a patch

for hormones. I've had my gallbladder out and also my appendix. I

take so much medicine for my stomach I told my pharmachist that if I

had heart trouble I would have had an attack after he told me what

one of my prescriptions cost. He said it was cheaper for heart

medicine. I think I'm helping him put his kids through college .

Apparently stomach medicine is a lot more expensive than heart

medicine. I take imuran for my hepatitis. I really haven't had any

side effects. I'm not sure what levels that everyone has. My

highest ones were AST 93, ALT 93, ALK 274, They have gone down since

I've been taking the imuran. I am one out of seven kids and my family

doesn't quite understand what's going on. They just know that I have

to keep having my blood taken and taking so many tests. I've tried

to explain, but it isn't easy. I told them there is no cure only

control. No one in my family has ever really been sick, except my

mom, but she past away a few years ago. Cereberal Hemmorage. My dad

couldn't understand why I had a liver disease since I don't drink at

all. I told him it didn't have anything to do with drinking. I

guess most people associate liver problems with drinking. It will be

great to talk to people that understand.

In @y..., sunshinedotson@a... wrote:

> In a message dated 11/15/01 8:36:59 PM Pacific Standard Time,

> seafarer52@m... writes:

>

>

> > Hi. My name is Ann and my doctor thought it might be a good idea

> > for me to join a support group. Hope you don't mind

>

> Welcome Ann....my name is Bert.--short for Bertha.

> I have just joined this group a couple days ago and they are all

great.....I

> vented a lot....and still do a little.... :-)

> and so far no one has complained... :-) :-)

> so feel free to tell all whats going on and ask lots of questions

if you need

> to....I agree with Harper...it's GREAT that your doc. suggested you

could

> benefit from support!!!!!!

>

> I have learned soooooo.......much here in this group!!!

> I was just DX by a doc. a month ago, haven't started treatment yet

bec. of a

> move to another city....

> I will be starting with a new doc....and hopefully get into seeing

a GI

> soon. And have a biopsy done for better DX.

>

> I am sorry to hear that you've had a rough time of it...but real

glad you are

> taking your illness seriously now.....

> and on a road to better health...

> 13 meds. huh????? I have seen that many people here are taking a

lot of

> meds. I wonder if i will have to too.....?

> it really sucks that meds. have side affects.....

> will your ulcers heal with the other meds. and change in diet

maybe????

> I hear ya about fear.....we all have that, so please don't feel

alone!!!!!

> You are absolutely right about the effort part of it.

> Harper set me a little straight on that.... :-) :-)

> I was feeling a little self pity in 1 e-mail or..2. :-) and she

gave me some

> food for thought, actually everyone did....

> I certaintly feel a lot of strenghth and wisdom here with this

group and you

> will too....stay with us.....there is funny stuff to read too

> sometimes....laughter is a part of healing too i always say....

> Best wishes to all....

> Bert.

[Guest guest]

> Glad to hear from you. And glad (and amazed) to hear that you

have a doctor

> who recognizes that one needs support, information!

> Harper (AIH dx 5/00)

Harper,

My doctor and his wife started and run a liver support group at my

hospital ( royal free hospital), they have a website, dinners,

newsletter etc...!!

(age 22 London UK)

[Guest guest]

> > In a message dated 11/15/01 8:36:59 PM Pacific Standard Time,

> > seafarer52@m... writes:

> >

> >

> > > Hi. My name is Ann and my doctor thought it might be a good

idea

> > > for me to join a support group. Hope you don't mind

> >

> > Welcome Ann....my name is Bert.--short for Bertha.

> > I have just joined this group a couple days ago and they are all

> great.....I

> > vented a lot....and still do a little.... :-)

> > and so far no one has complained... :-) :-)

> > so feel free to tell all whats going on and ask lots of questions

> if you need

> > to....I agree with Harper...it's GREAT that your doc. suggested

you

> could

> > benefit from support!!!!!!

> >

> > I have learned soooooo.......much here in this group!!!

> > I was just DX by a doc. a month ago, haven't started treatment

yet

> bec. of a

> > move to another city....

> > I will be starting with a new doc....and hopefully get into

seeing

> a GI

> > soon. And have a biopsy done for better DX.

> >

> > I am sorry to hear that you've had a rough time of it...but real

> glad you are

> > taking your illness seriously now.....

> > and on a road to better health...

> > 13 meds. huh????? I have seen that many people here are taking a

> lot of

> > meds. I wonder if i will have to too.....?

> > it really sucks that meds. have side affects.....

> > will your ulcers heal with the other meds. and change in diet

> maybe????

> > I hear ya about fear.....we all have that, so please don't feel

> alone!!!!!

> > You are absolutely right about the effort part of it.

> > Harper set me a little straight on that.... :-) :-)

> > I was feeling a little self pity in 1 e-mail or..2. :-) and she

> gave me some

> > food for thought, actually everyone did....

> > I certaintly feel a lot of strenghth and wisdom here with this

> group and you

> > will too....stay with us.....there is funny stuff to read too

> > sometimes....laughter is a part of healing too i always say....

> > Best wishes to all....

> > Bert.

It's interesting that in such a big family no one else has an

autoimmune disease. Many, if not most, of us have other family

members who have/had various different ones. In my family rheumatoid

arthritis and asthma seem to predominate. I seem to be the only one

with AIH. I also have a mild case of achalasia, which is though by

some to also be autoimmune. Jean

[Guest guest]

Welcome Ann,

This support group has helped me immensely. Join in and know that

you will get the support you need here.

Just a note to all- Last week when I saw my gastroenterologist I

asked him if there was a local cirrhosis support group. He told me

that the only ones they have were not ones that he would not want me

to go to. The nearest ones for AIH are Seattle (3 hrs away) or

Portland, Ore. (1hr away). Then he asked me if I would like to start

a local AIH support group. I had to laugh, I don't have enough

energy to get to one let alone start one. Has anyone out there

started their own support group? If so, I was thinking maybe I

could get some info on how to go about starting one for when I feel

better. There is definitely a need in the area.

Have a great Day,

Joanna

> Hi. My name is Ann and my doctor thought it might be a good idea

> for me to join a support group. Hope you don't mind.

[Guest guest]

In a message dated 11/16/01 12:02:25 PM Pacific Standard Time, seafarer52@... writes:

I take imuran for my hepatitis.

Seafarer, has your doctor ever suggested that you take Prednisone along with the Imuran? The two are most often prescribed as a pair, but perhaps he or she sees that you can avoid Prednisone -- which has unpleasant side effects.

Harper

[Guest guest]

In a message dated 11/16/01 3:44:24 PM Pacific Standard Time, ticklemelui@... writes:

> Glad to hear from you. And glad (and amazed) to hear that you have a doctor > who recognizes that one needs support, information!

> Harper (AIH dx 5/00)

Harper,

My doctor and his wife started and run a liver support group at my hospital ( royal free hospital), they have a website, dinners, newsletter etc...!!

(age 22 London UK)

Wonderful! I learned that my HMO (pre-paid "Health Maintenance Organization" has a liver support group. But no one told me about it.

Harper

[Guest guest]

In a message dated 11/16/01 4:03:10 PM Pacific Standard Time, jeanfran@... writes:

I also have a mild case of achalasia, which is though by some to also be autoimmune. Jean

Can you save us a search an tell us what achalasia is? Thanks.

Harper

[Guest guest]

In a message dated 11/19/01 7:35:56 PM Pacific Standard Time, seafarer52@... writes:

I did take prednisone with Imuran together but only for a short time. She didn't give me a reason for taking me off it. It may have something to do with my ulcers.

Ann

Do ask, if only to know in case you need to talk with other doctors when she's not available. You need to know these things.

Harper

[Guest guest]

I did take prednisone with Imuran together but only for a short time. She didn't give me a reason for taking me off it. It may have something to do with my ulcers. Ann Re: [ ] Re: Autoimmune hepatitis In a message dated 11/16/01 12:02:25 PM Pacific Standard Time, seafarer52@... writes: I take imuran for my hepatitis. Seafarer, has your doctor ever suggested that you take Prednisone along with the Imuran? The two are most often prescribed as a pair, but perhaps he or she sees that you can avoid Prednisone -- which has unpleasant side effects. Harper

[Guest guest]

Although a Liver Biopsy is preferable... some of us can't have one due to blood clotting times etc...

Response to medication is also a way to diagnose AIH when a Liver Biopsy is not appropriate.

Check with your physician regarding both.

Jen

From: Pollitt [mailto: kyleigh@...]

Date: Fri, 23 Aug 2002 07:14:13 -0700

Subject: Re: [ ] autoimmune hepatitis

>

>

>

>

>

> Hello, My son was just dx about a month ago,

> and

> from what his GI dr. said, your bood work just gives markers as to what's

> wrong,

> the only way to absolutely dx this diease is with a liver biopsy, so if

> they

> tell you that you have this they need to do a liver biopsy to see just how

> far

> along this diease is. Even though your enzy. levels aren't very high

> doesn't

> mean the damage isn't there and they need the biopsy to tell.  Don't

> let

> them tell you that you have this and that you don't need a liver biopsy,

> because

> you do. My son was in liver failure when he was admitted into the All

> childrens

> hosp. Both his liver and his spleen were enlarged, and they ran a series

> of

> tests on him (blood), and finally the liver biopsy was the very last one,

> and

> before he did this he told me, yes he had AIH, but to make absolutely sure

> we're

> going to do a liver biopsy. And so he did.  So  I strongly urge

> you

> get one.

>

> Damyan's mother

>

> style="BORDER-LEFT: #000000 2px solid; MARGIN-LEFT: 5px; MARGIN-RIGHT:

> 0px; PADDING-LEFT: 5px; PADDING-RIGHT: 0px">

> [ ]

> autoimmune

> hepatitis

> I was diagnosed today with autoimmune

> hepatitis.  For

> the last year my ast alt have been mildly increased (60-137

>

> 70-144). I haven't had a liver biopsy yet, the P.A. told me that my

> blood

> test was positive for aih. My most recent blood work was barely

> above the

> normal limits and I really don't have any symptoms, other than

> fatigue, but I have been working two jobs for the 2 years and

> havebeen

> contributing the fatigue to that. I know nothing about aih other

> than what

> I have found on the internet. The P.A. was very vague aboutit other

> than

> it can cause cirrhosis, and to be honest my mind wentblank after she

> told

> me that. I have a list of questions to ask the GI but if they don't

> want

> to a liver biopsy I won't see him for two months. I would appreciate

> any

> info anyone has.ThanksGroup

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>

>

>

>

>

>

>

>

>

[Guest guest]

i'm sorry but i don't think you signed your name....

anyhow here are a few things i've learned...you can't

really know if you have aih until you've had a

biopsy....*i think this is right* ALSO and this is a

HUGE also... your doctor should put you on some kind

of medicine and then see you a week or two later to

take blood and make sure you are responding to the

meds.... you need to be monitored on the meds you will

probably be put on.... MANY MANY doctors out there DO

NOT understand this disease like they should....

especially if they *claim* to be treating it..... so,

if this ISN'T what your doc is doing.... find a second

opinion....

my prayers are with you

courtney

=====

Mother diagnosed with AIH August 2, 2002

__________________________________________________

[Guest guest]

Hello, My son was just dx about a month ago, and from what his GI dr. said, your bood work just gives markers as to what's wrong, the only way to absolutely dx this diease is with a liver biopsy, so if they tell you that you have this they need to do a liver biopsy to see just how far along this diease is. Even though your enzy. levels aren't very high doesn't mean the damage isn't there and they need the biopsy to tell. Don't let them tell you that you have this and that you don't need a liver biopsy, because you do. My son was in liver failure when he was admitted into the All childrens hosp. Both his liver and his spleen were enlarged, and they ran a series of tests on him (blood), and finally the liver biopsy was the very last one, and before he did this he told me, yes he had AIH, but to make absolutely sure we're going to do a liver biopsy. And so he did. So I strongly urge you get one.

Damyan's mother

[ ] autoimmune hepatitis

I was diagnosed today with autoimmune hepatitis. For the last year my ast & alt have been mildly increased (60-137 & 70-144). I haven't had a liver biopsy yet, the P.A. told me that my blood test was positive for aih. My most recent blood work was barely above the normal limits and I really don't have any symptoms, other than fatigue, but I have been working two jobs for the 2 years and havebeen contributing the fatigue to that. I know nothing about aih other than what I have found on the internet. The P.A. was very vague aboutit other than it can cause cirrhosis, and to be honest my mind wentblank after she told me that. I have a list of questions to ask the GI but if they don't want to a liver biopsy I won't see him for two months. I would appreciate any info anyone has.Thanks

[Guest guest]

Jen,

My Hepatologist said that if clotting factors weren't better controlled they

would do the next bx transjugular. I think some here have had it done this

way. I have a friend who had hers done like this. Maybe this is a

possibility for you. You might want to ask.

[Guest guest]

, my clotting factors are within normal range now. I recently had heal spur surgery w/o problems. I've mentioned a biopsy and my Gastro feels that there is no need for it as I have responded to medication for the treatment of AIH and he feels confident in the diagnosis AIH based on that. Why do an unnecessary procedure. Also, it has nothing to do with HMO or cost saving issues.

Thanks, Jen

From: [mailto: MKANTZLE@...]

Date: Sun, 25 Aug 2002 15:56:56 EDT

Subject: Re: [ ] autoimmune hepatitis

>

>

>

>

> Jen,

>

> My Hepatologist said that if clotting factors weren't better controlled

> they

> would do the next bx transjugular.  I think some here have had it

> done this

> way.  I have a friend who had hers done like this.  Maybe this

> is a

> possibility for you.  You might want to ask.

>

>

>

>

>

>

>

>

[Guest guest]

Push the doctor ... I went thru a month of having blood drawn and my levels were critically high .The dr I was seeing said "your a liver problem "dont worry about it ...Well who was I to argue with a dr....Thankfully i saw a different dr and she told me to go to the emer rm...my sugar level dropped to 34.. billi was 55. crits and "slag" in urine going into kidney failure ,blood clotting factors were gone ... i was ambulanced away from the dr into the hands of a wonderful hepatologist and team...He said I should always push...Only you know your body ... I f the dr . doesnt like it then find another one because with aih you need to have confidence and if you see hes a lil slow then run .....karen s.car

[Guest guest]

Welcome to our group. I know how frustrating not knowing what is going on can be - unfortunately, this illness takes it's own turns and twists but the more you know about it, the better.

The liver biopsy may be what is holding up a definite diagnosis of AIH. Along with the other tests, it seems to add the final conclusion. Have they put you on any meds yet? It seems that they could treat some of your symptoms. Perhaps they are waiting to see the whole picture. I hope they get to it quickly!

Let us know how it goes.

Amy

[Guest guest]

Hi, You haven't said whether your on any treatment. If your not, then I'd ask your doc why? Because you need to be treated, if it's AIH that is. AIH can be treated and controled very well. If you need any more info about AIH just either ask this group as there are people with loads of advice or you can visit a website I set-up which explains AIH in plain english www.AutoImmuneHepatitis.co.uk and visit the FAQs section as well as drug info and loads more.

Take care, and remember your not alone on this one where here to help each other.

Matt Hastings AIH-94 T-99 UK

rowdyrandi46737 wrote:

I have just been diagnosed with autoimmune hepatits - at least that is what the doctor THINKS I have. I just love the fact that he is so uncertain. Is it really that hard to diagnose? I have been to 3 doctors and this one has been great about explaining things to me and has seemed very thorough - but he seems to be slow on getting things GOING. Maybe I don't need to worry so much but I am one of those people that wants to KNOW who the enemy is so I can start fighting it!! I hate this not knowing plus in the meantime my joints ache so much that there are days I can barely walk and I can't grip things because my hands hurt so much. My liver enzymes were as high as 659 for the AST and 485 for the ALT and have gone down to as low as 140 for each. They have been going up and down week by week. The doctor just keeps taking blood on a weekly basis and we have not yet even done a liver biopsy. My extreme fatigue has gone but the abdominal pain comes and goes. The joint pain is always there. I get itching sometimes. My ANA results were 1:640. Is there anything I can do to relieve the joint pain that anyone knows of. Should I be pushing the doctor harder to get on the ball?! I hate the thought of taking prednisone becuase of all of its side effects but hav heard that balancing it with Imuran reduces the side effects.Can anyone furnish their own experiences?