autoimmune hepatitis

[Guest guest]

Do you guys advice anyone here to get a second opion? My Doc seems to work reallll slow and I've been having stomach problems, and lots of fatigue , and lots of nausa and it seems to me I'm missable and he's not so thats why he takes thing so slow, What do you guys think? ......Ca

[Guest guest]

get a second opinion

[Guest guest]

I was not aware that there were treatments that did NOT include taking the prednisone! I thought the usual treatment consisted of a combination of pred and imuran (or cellsep). Will the imuran stop the immune system on its own? What does the pred do that the imuran does not?

My achiness if getting steadily worse and worse.

Re: [ ] Autoimmune Hepatitis

I think it is a must that you get a second opinion. Many specialist treat the different liver diseased different. I see a lot of this group taking predisone. Fortunately, since I knew the long term effects this medication can cause, I did not want to take it. My main BPC doc does not use predisone unless nothing else works. Right now I am able to control my ache joints and sore feet with ultram. Absolutely get a second opinion and then decide which treatments you want to try first.Carolyn D

[Guest guest]

My doctor is just monitoring my liver enzyme levels at this point. He plans on doing a liver biopsy soon (I have another appointment with him tomorrow) and then set up a plan of action.

Re: [ ] Autoimmune Hepatitis

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?

[Guest guest]

How do I know if the doctor I am going to is good? He appears to be interested and listens and explains well but what types of questions should I ask to be sure?

Re: [ ] Autoimmune Hepatitis

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]

randy ... i strongly suggest going to matt hastings site .. i learned a lot from his area ....the explanations of tests and faqs..hes at autoimmune hepatitis uk.com i believe good luck karen

[Guest guest]

Randi ... besides being an immunosuppressant prednisone is mainly an

anti-inflammatory which is used for many other conditions... such as

asthma..

Because of it's side effects long term it is weaned down after the

inflammation is controlled and an immuno. such as Immuran. Other

immunos. have been used such as cellcept , MP6, cyclosporine, prograf,

etc.

The use of prednisone has been found to quickly quell inflammations and

has many uses.

After I was Tx'd I was on prednisone and prograf but the predniisone was

removed

in about 6 months and I've been on prograf 2mgs/bid ever since. When my

AIH flared up they put me back on pred. to stave off the inflammation.

since the immuran etc. doesn't cure us the pred. is still used to hold

back inflammation which leads to cell death to fibrosis to cirhosis.

Each person is different and the degree of effectiveness and tolerabilty

varies.

BTW I have a huge file on just about evey question that gets asked here

and there are still some answers that don't quite respond to all our

different questions.

jerry

I was not aware that there were treatments that did NOT include taking the prednisone! I thought the usual treatment consisted of a combination of pred and imuran (or cellsep). Will the imuran stop the immune system on its own? What does the pred do that the imuran does not?

My achiness if getting steadily worse and worse.

Re: [ ] Autoimmune Hepatitis

I think it is a must that you get a second opinion. Many specialist treat the different liver diseased different. I see a lot of this group taking predisone. Fortunately, since I knew the long term effects this medication can cause, I did not want to take it. My main BPC doc does not use predisone unless nothing else works. Right now I am able to control my ache joints and sore feet with ultram. Absolutely get a second opinion and then decide which treatments you want to try first.Carolyn D

[Guest guest]

What dose of Prednisone were you on and did you have any side effects?

Re: [ ] Autoimmune Hepatitis

Randi ... besides being an immunosuppressant prednisone is mainly ananti-inflammatory which is used for many other conditions... such asasthma.. Because of it's side effects long term it is weaned down after theinflammation is controlled and an immuno. such as Immuran. Otherimmunos. have been used such as cellcept , MP6, cyclosporine, prograf,etc. The use of prednisone has been found to quickly quell inflammations andhas many uses.After I was Tx'd I was on prednisone and prograf but the predniisone wasremovedin about 6 months and I've been on prograf 2mgs/bid ever since. When myAIH flared up they put me back on pred. to stave off the inflammation.since the immuran etc. doesn't cure us the pred. is still used to holdback inflammation which leads to cell death to fibrosis to cirhosis.Each person is different and the degree of effectiveness and tolerabiltyvaries. BTW I have a huge file on just about evey question that gets asked hereand there are still some answers that don't quite respond to all ourdifferent questions.jerry

[Guest guest]

Randi.....

after the Tx I don't remember what dosage I was on nor do I remember any

specific side effects, as, at the time I was on a number of drugs.....

when my AIH was discovered in 2000

I was put on 60 mgs initially. The immediate effects were mood swings

especially anger which is totally not me and moon face and weight

gain....all these went away eventually but I'm still about 15 lbs

heavier than I was. I take 5 mgs. now.

jerry

[Guest guest]

Great info! thanks

>

>

>

http://www.gastro.com/html/liverdisease/autoimmune_hepatitis.shtml

> 1) What is Autoimmune Hepatitis?

>

> Autoimmune hepatitis or autoimmune chronic hepatitis is a

progressive inflammation of the liver that has been identified by a

number of different names, including autoimmune chronic active

hepatitis (CAH), idiopathic chronic active hepatitis, and lupoid

hepatitis. The reason for this inflammation is not certain, but it is

associated with an abnormality of the body's immune system and is

often related to the production of antibodies that can be detected by

blood tests.

>

> Autoimmune hepatitis was first described in 1950 as a disease

of young women, associated with increased gamma globulin in the blood

and chronic hepatitis on liver biopsy. The presence of antinuclear

antibodies (ANA) and the resemblance of some symptoms to " systemic

lupus erythematosus " (SLE) led to the label " lupoid hepatitis. " It

later became evident that this disease was not related to SLE. The

disease is now called autoimmune hepatitis.

> TOP

>

>

> 2) What are the Symptoms?

>

> The typical patient with autoimmune hepatitis is female (70

percent). The disease may start at any age, but is most common in

adolescence or early adulthood. Blood tests identify ANA or smooth

muscle antibodies (SMA) in the majority of patients (60 percent).

More than 80 percent of affected individuals have increased gamma

globulin in the blood. Some patients have other autoimmune disorders

such as thyroiditis, ulcerative colitis, diabetes mellitus, vitiligo

(patchy loss of skin pigmentation), or Sjogren's syndrome (a syndrome

that causes dry eyes and dry mouth). Other liver diseases such as

viral hepatitis, 's disease, hemochromatosis, and alpha-1-

antitrypsin deficiency should be excluded by appropriate blood tests,

and the possibility of drug-induced hepatitis is ruled out by careful

questioning.

>

> The most common symptoms of autoimmune hepatitis are fatigue,

abdominal discomfort, aching joints, itching, jaundice, enlarged

liver, and spider angiomas (tumors) on the skin. Patients may also

have complications of more advanced chronic hepatitis with cirrhosis,

such as ascites (abdominal fluid) or mental confusion called

encephalopathy. A liver biopsy is important to confirm the diagnosis

and provide a prognosis. Liver biopsy may show mild chronic active

hepatitis, more advanced chronic active hepatitis with scarring

(fibrosis), or a fully developed cirrhosis.

> TOP

>

>

> 3) How is Autoimmune Hepatitis Treated?

>

> The 10-year survival rate in untreated patients is

approximately 10 percent. The treatment of autoimmune hepatitis is

immunosuppression with prednisone alone or prednisone and

azathioprine (Imuran). This medical therapy has been shown to

decrease symptoms, improve liver tests, and prolong survival in the

majority of patients. Therapy is usually begun with prednisone 30 to

40 mg per day and then this dosage is reduced after a response is

achieved.

>

> The standard dosage used in the majority of patients is

prednisone 10-15 mg per day, either alone or with azathioprine 50 mg

per day. Higher doses of prednisone given long-term are associated

with an increase in serious side effects including hypertension,

diabetes, peptic ulcer, bone thinning, and cataracts. Lower doses of

prednisone may be used when combined with azathioprine.

>

> The goal of treatment of autoimmune hepatitis is to cure or

control the disease. In two thirds to three quarters of the patients,

liver tests fall to within the normal range. Long-term follow-up

studies show that autoimmune hepatitis appears more often to be a

controllable rather than a curable disease, because the majority of

patients relapse within six months after therapy is ended. Therefore,

most patients need long-term maintenance therapy.

>

> Not all patients with autoimmune hepatitis respond to

prednisone treatment. Approximately 15-20 percent of patients with

severe disease continue to deteriorate despite initiation of

appropriate therapy. This is most common in patients with advanced

cirrhosis on initial liver biopsy. Such patients are unlikely to

respond to further medical therapy, and liver transplantation should

be considered.

> TOP

>

>

> The American Liver Foundation is the only national voluntary

non-profit health organization dedicated to treating, curing, and

preventing hepatitis and other liver and gallbladder diseases through

research and education.

>

>

> American Liver Foundation

> 1425 Pompton Avenue

> Cedar Grove, NJ 07009

> 1-800-223-0179

[Guest guest]

In a message dated 10/29/02 12:19:56 PM Eastern Standard Time, bridgiemarie@... writes:

Please if there is anyone who can relate

to what I'm saying please respond. I feel so alone with this

already. Bridgette

Hi Bridgette,

Welcome to the group. I am new here also so I am still learning.

Cheryl

[Guest guest]

Hi Bridgette - I missed your email sorry. Will respond if you care to mail again.

Jan

Re: [ ] autoimmune hepatitis

In a message dated 10/29/02 12:19:56 PM Eastern Standard Time, bridgiemarie@... writes:

Please if there is anyone who can relate to what I'm saying please respond. I feel so alone with this already. BridgetteHi Bridgette,Welcome to the group. I am new here also so I am still learning.Cheryl

[Guest guest]

Bridgette. Hi! Welcome to our group.

The mother hens here have already given you the most important

advice...... " You can't know what the future will bring, so worrying

about it will change nothing, but worrying will keep you from enjoying

life. "

You say that you've been doing well for the last 11 yrs.......well

what's to say you won't continue to for another 99? This disease is in

no way a death sentence..it's more like an inconvenience. Do as you

should and all those things you hope for should come to pass. Likewise a

liver transplant isn't a death sentence either but a " gift of life " .

That's a stupid statistic..... " 5 year survival rate " .

It doesn't mean a thing.You are far to young and far too healthy to be

thinking about a transplant that may NEVER be needed. I had a transplant

at age 52 and here it is 7 years later and I have no intention of

dying... there are some here who have been transplanted longer than I.

Start working on your dreams and stop dwelling on your mortality.... you

are far, far too young.

A laugh or 2 or 3 or more a day keeps the doctor away..

again welcome....love jerry : )

[Guest guest]

hello i was dx 03/2002 am now on 7.5 mg prednisone and 150 mg immuran .. my rheumetolodists and internist are having the pred stay at 7.5 or go back to 10 mg .. discussion is on at the hepatologists office .. the physical therapist is worried also .. my knees ankles and right ekbow are swelling and i can barely walk due to the pain ... no sign of ra or lupoid and pain just got extreme when pred was lowered ...I ,like yourself, heard all the greatness of milk thistle but my hepatologist said no ... follow your drs advise ...take care karen .... ps yes hair did fall out , mine used to be very thick and long ...not now ... dr says it has been thru a traumatized state but will grow again ... take care

[Guest guest]

Welcome Colleen, you have found a great place for support and information.

Cheryl

[Guest guest]

Colleen:

You should receive a lot of information from this site that will be helpful. There are a bunch of terrific people here that helped me when I found out I had it too........

What levels of prednisone and imuran are you on right now? I started at 40 mg pred and 50 imuran and am now weaning down 10 mg at a time. I had a few side effects like hyperness and sleeplessness and I have noticed my hair feeling thinner too. All of these supposedly go away once you are weaned off the drugs.

I too had never heard of this disease until I was diagnosed with it - and now I hear about it a LOT!

Have you had a liver biopsy?

Randi

[ ] Autoimmune Hepatitis

Hello, I am a 26 years old and was just diagnosed with AIH. I am on bothPrednisone and Immuran. The side effects are horrible. I wondered if theside effects would decrease as the medication is decreased? If this is thecase, do you know at which level I will start to see a light at the end ofthe tunnel? Thankfully, my enzymes are back to normal but, I don't feelnormal. My eyes are blood shot and I swear my hair is falling out. Anyadvice or information would be greatly appreciated. Is there anything else Ican do? I heard that Milk Thistle can repair liver cells? Again, I amhaving a hard time dealing with this disease that no one really knowsanything about.

[Guest guest]

Hi Colleen welcome. You have come to the right place because we here

know a lot about AIH. There actually is plenty of info about it.We can

send you what ever you want.

Milk thistle probably won't hurt you but it will do nothing to cure or

stop AIH. The program your doctor sugested is so far the best way to

treat AIH.

Ask any thing you want or just complain you've got sympathetic, kndred

ears here.

Welcome aboard.

jerry

[Guest guest]

Thanks for all your kind words and well wishes. I have another question for

all you AIH people. Have any of you experienced any kind of relapse since

medication has been decreased? Have any of you tried to take a holiday from

all the medications? If so, at which point of your treatment did you try

this?

Re: [ ] Autoimmune Hepatitis

Hi Colleen welcome. You have come to the right place because we here

know a lot about AIH. There actually is plenty of info about it.We can

send you what ever you want.

Milk thistle probably won't hurt you but it will do nothing to cure or

stop AIH. The program your doctor sugested is so far the best way to

treat AIH.

Ask any thing you want or just complain you've got sympathetic, kndred

ears here.

Welcome aboard.

jerry

[Guest guest]

Colleen..... in AIH you pretty much stuck with meds. for awhile. You

should never just stop prednisone as it could cause unwanted sides. AIH

is incurable right now but can be controlled for a long time. stopping

the meds.can, and often do, cause a flare up (relapse) . Each case is a

little different and if you have a capable specialist, he/she will know

how to dose you correctly.

jerry

[Guest guest]

Hi Colleen. I rarely post, but thought I would stick my head in and

say hi.

I'm Heidi, I'm 26 years also and have had AIH for about 9 years. In

the beginning when I was diagnosed and had all the side effects I

tried to go down in my medication just because I was stubborn and

stupid. It never worked, my numbers went up and I would go back on a

higher dose of medication. I wouldn't reccomend it

I'll probably never get off the medication, but I'm on a dose where I

don't have any side effects and live a normal life.

So hang in there!! My hair fell out to, but now it is even thicker

than before I started the meds.

Heidi Gardarsson

> Thanks for all your kind words and well wishes. I have another

question for

> all you AIH people. Have any of you experienced any kind of relapse

since

> medication has been decreased? Have any of you tried to take a

holiday from

> all the medications? If so, at which point of your treatment did

you try

> this?

>

> Re: [ ] Autoimmune Hepatitis

>

>

> Hi Colleen welcome. You have come to the right place because we

here

> know a lot about AIH. There actually is plenty of info about it.We

can

> send you what ever you want.

> Milk thistle probably won't hurt you but it will do nothing to cure

or

> stop AIH. The program your doctor sugested is so far the best way to

> treat AIH.

> Ask any thing you want or just complain you've got sympathetic,

kndred

> ears here.

> Welcome aboard.

>

> jerry

>

>

>

>

[Guest guest]

Thanks for your input Heidi!!! What doses are you on currently??

Also, All your hair didn't fall out, did it?? I am freaking out right

now!!!, I am a freak about gaining an weight. If I were going to gain

weight? Would I by now? I have been on the medication for 3 months and

haven't gained any yet? But, I am terrified of gaining a lb???

Re: [ ] Autoimmune Hepatitis

>

>

> Hi Colleen welcome. You have come to the right place because we

here

> know a lot about AIH. There actually is plenty of info about it.We

can

> send you what ever you want.

> Milk thistle probably won't hurt you but it will do nothing to cure

or

> stop AIH. The program your doctor sugested is so far the best way to

> treat AIH.

> Ask any thing you want or just complain you've got sympathetic,

kndred

> ears here.

> Welcome aboard.

>

> jerry

>

>

>

>

[Guest guest]

No I never got bald

I've been on 7.5 mg of prednisone and 100 mg of imuran for years.

I can't promise you that you won't gain any weight. I think most

people do? I don't know how much I gained when I was on the high

doses, but in my case it came off when the medication was lowered.

Right now I could loose maybe another 10 pounds, but it's not worse

than I could get it off if I really tried. We had a son 1 year ago,

so I blame it on the pregnancy.

But I do have to admit that it is harder to loose weight when you are

on the prednisone.

Well ask away if you have more questions. Many people just wants to

get off the meds as fast as possible which is understandable. But I'd

say from experience that it is better to lower them slowly than have

to jump up to a bigger dose and have the side effects start all over!!

Heidi Gardarsson

> > Thanks for all your kind words and well wishes. I have another

> question for

> > all you AIH people. Have any of you experienced any kind of

relapse

> since

> > medication has been decreased? Have any of you tried to take a

> holiday from

> > all the medications? If so, at which point of your treatment did

> you try

> > this?

> >

> > Re: [ ] Autoimmune Hepatitis

> >

> >

> > Hi Colleen welcome. You have come to the right place because we

> here

> > know a lot about AIH. There actually is plenty of info about

it.We

> can

> > send you what ever you want.

> > Milk thistle probably won't hurt you but it will do nothing to

cure

> or

> > stop AIH. The program your doctor sugested is so far the best way

to

> > treat AIH.

> > Ask any thing you want or just complain you've got sympathetic,

> kndred

> > ears here.

> > Welcome aboard.

> >

> > jerry

> >

> >

> >

> >

[Guest guest]

Did you have any problems getting pregnant b/c of the AIH or any problems

with the medications while pregnant?

Re: [ ] Autoimmune Hepatitis

> >

> >

> > Hi Colleen welcome. You have come to the right place because we

> here

> > know a lot about AIH. There actually is plenty of info about

it.We

> can

> > send you what ever you want.

> > Milk thistle probably won't hurt you but it will do nothing to

cure

> or

> > stop AIH. The program your doctor sugested is so far the best way

to

> > treat AIH.

> > Ask any thing you want or just complain you've got sympathetic,

> kndred

> > ears here.

> > Welcome aboard.

> >

> > jerry

> >

> >

> >

> >

[Guest guest]

we didn't have any problems getting pregnant. But it depends on how

critical a stage you are in if the doctors recommend it or not. If

possible in any way I think they want you to be off the imuran when

you get pregnant. It wasn't an option for me to stop the medication,

so I continued the same dose while pregnant. I was monitored very

very closely, but everything went smoothly. Ofcourse you run a bigger

risk, but we were lucky and had a beautiful healthy baby!!

Heidi Gardarsson

> > > Thanks for all your kind words and well wishes. I have another

> > question for

> > > all you AIH people. Have any of you experienced any kind of

> relapse

> > since

> > > medication has been decreased? Have any of you tried to take a

> > holiday from

> > > all the medications? If so, at which point of your treatment

did

> > you try

> > > this?

> > >

> > > Re: [ ] Autoimmune Hepatitis

> > >

> > >

> > > Hi Colleen welcome. You have come to the right place because

we

> > here

> > > know a lot about AIH. There actually is plenty of info about

> it.We

> > can

> > > send you what ever you want.

> > > Milk thistle probably won't hurt you but it will do nothing to

> cure

> > or

> > > stop AIH. The program your doctor sugested is so far the best

way

> to

> > > treat AIH.

> > > Ask any thing you want or just complain you've got sympathetic,

> > kndred

> > > ears here.

> > > Welcome aboard.

> > >

> > > jerry

> > >

> > >

> > >

> > >

[Guest guest]

I think it is the Imuran. In fact, when I increased my dosage of

Imuran and lowered my dosage of Prednisone my hair REALLY started to

fall out. Even though there is SO MUCH in the sink each morning, it

doesn't really show and no one can tell but me. It has been going on

for months, so it doesn't look like I will really be bald. Remember,

Imuran is a form of chemotherapy, but people who become bald from

chemo are on VERY high doses...much higher than anything we take for

AIH. Hang in there, things will get better for you guys!

> > Thanks for all your kind words and well wishes. I have another

> question for

> > all you AIH people. Have any of you experienced any kind of

relapse

> since

> > medication has been decreased? Have any of you tried to take a

> holiday from

> > all the medications? If so, at which point of your treatment

did

> you try

> > this?

> >

> > Re: [ ] Autoimmune Hepatitis

> >

> >

> > Hi Colleen welcome. You have come to the right place because

we

> here

> > know a lot about AIH. There actually is plenty of info about

it.We

> can

> > send you what ever you want.

> > Milk thistle probably won't hurt you but it will do nothing to

cure

> or

> > stop AIH. The program your doctor sugested is so far the best

way to

> > treat AIH.

> > Ask any thing you want or just complain you've got sympathetic,

> kndred

> > ears here.

> > Welcome aboard.

> >

> > jerry

> >

> >

> >

> >