RE: Re: AIH with Grade 2, Stage 2

[Guest guest]

Rani, you say you're taking only Imuran now; have you ever taken anything else,

such as Prednisone, for AIH? My understanding is that very few people are able

to control serious AIH without some amount of Prednisone. A few people report

here that they have " mild " AIH and are in a wait-and-watch situation in terms of

Prednisone; however, that seems to be unusual.

Prednisone isn't pleasant to take. It can have a lot of side effects, which

affect some people more than others. However, it seems to be the medication of

choice for AIH. You might want to do some reading on the standard treatment for

the disorder. If you can avoid Prednisone, that's great. Most people can't.

I strongly believe that I wouldn't be alive without Prednisone combined with

Imuran. Each of us is different; AIH is a highly variable condition.

You speak of progression to Stage 2. Is this your second biopsy? If so, what did

your first biopsy show?

I think that a biopsy may show cirrhosis (which is scarring) from past problems

even though ALT/AST levels have become normal. Cirrhosis sometimes is

reversible.

Have you been tested for various vitamin and mineral deficiencies that could

increase your weakness and achiness? Could you have celiac disease, the most

common of all autoimmune disorders (ADs)? About half the people diagnosed with

CD have no GI symptoms; a blood test can diagnose it.

Have you had a toxicity test for Imuran? Some people have a genetic condition

that causes them to react badly to it. For those people, little or no Imuran is

advised.

Make sure you stay up to date on all vaccines, such as hepatitis A and B,

pneumonia, flu, and tetanus. You particularly need Hep A and B vaccines, as a

damaged liver is ill-equipped to deal with an additional form of hepatitis.

Many of us have flare-ups, primarily evidenced by changes in our liver panels;

this can go on for a life-time. It's the usual nature of AIH, I think.

AIH is a treatable disorder. Most of us plod along with it, adjusting dosages,

having bad times and good times. Some people have an easier time with the

disease and medication side effects than others. Some develop other ADs. And

yes, in all honesty, some few people in this group have died as a result of AIH.

However, with every year treatment is fine-tuned, and those of us with AIH

benefit. The basic treatment remains the same -- Prednisone and a

steroid-sparing drug such as Imuran, but doctors learn more about its

application. Also, there's always the possibility of a liver transplant, should

it come to that. Most of us with AIH live long, productive lives; we're not

comfortable all the time, and we tend to have bad episodes, but generally our

lives go pretty well.

I'm just a person with AIH, with no medical training. Only your doctor can tell

you where you stand right now. My guess is that you are worrying unnecessarily

and that you will be there for grandchildren.

Best wishes.

Harper

AIH dx 2000

CD dx 2002

[ ] AIH with Grade 2, Stage 2

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> Hello Everyone,

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> I was diagnosed with severe AIH in 2002. Since then it has slowed down, then

had two more flare ups, then slowed down again. Currently on 50mg of imuran.

However, I have become very weak, feel nausated, cannot concentrate much, also

have developed all types of pains. Recently I had another biopsy done, the

results show I am at grade 2, stage 2. I am copying the parts of the report for

the more learned readers:

>

> The portal tracts are mildly expanded and fibrotic but with no well

established portal to portal or portal to central bridges.

> Within the portal triads there is a low-grade infiltrate of chronic

inflammatory cells including lymphocytes and plasma cells present.

> Low-grade interface hepatitis is noted. Within the liver lobule, there are

occasional foci of inflammation present. Not accompanied by hepatocyte necrosis.

There is mild steatosis involving 10% of the hepatocytes.

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> Iron stores are normal and stains for alpha-1 antitrypsin bodies are negative.

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> The appearances are those of a low-grade chronic hepatitis. The presence of

plasma cells within the infiltrate is in keeping with the clinical history of

treatment suppressed autoimmune hepatitis. On the Ludwig scale these changes

are assessed as grade 2, stage 2.

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> My questions:

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> Does this biopsy explain why I am having all these problems?

> If I am in stage 2 in 8 years, about how many years do I have more to live?

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> Thank you,

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> Rani

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[Guest guest]

Rani, here's another suggestion: you might like a book by Dr. Palmer,

" Guide to Liver Disease. " If you don't find it locally, it's available from

Amazon for less than $20.

Have you considered getting a second opinion from a hepatologist? Most of us

prefer to deal with a specialist in liver disease. I worked with a GI for about

five years; he was perfectly competent. When my insurance plan led me to see a

hepatologist, my treatment became much more focused. She dealt with things, made

suggestions, that had never been brought up by my GI -- who is a highly skilled

gastroenterologist, well respected in his field. But, his field isn't liver

disease.

Harper

AIH dx 2000

CD dx 2002

[ ] AIH with Grade 2, Stage 2

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>

>

>

>

> Hello Everyone,

>

> I was diagnosed with severe AIH in 2002. Since then it has slowed down, then

had two more flare ups, then slowed down again. Currently on 50mg of imuran.

However, I have become very weak, feel nausated, cannot concentrate much, also

have developed all types of pains. Recently I had another biopsy done, the

results show I am at grade 2, stage 2. I am copying the parts of the report for

the more learned readers:

>

> The portal tracts are mildly expanded and fibrotic but with no well

established portal to portal or portal to central bridges.

> Within the portal triads there is a low-grade infiltrate of chronic

inflammatory cells including lymphocytes and plasma cells present.

> Low-grade interface hepatitis is noted. Within the liver lobule, there are

occasional foci of inflammation present. Not accompanied by hepatocyte necrosis.

There is mild steatosis involving 10% of the hepatocytes.

>

> Iron stores are normal and stains for alpha-1 antitrypsin bodies are negative.

>

> The appearances are those of a low-grade chronic hepatitis. The presence of

plasma cells within the infiltrate is in keeping with the clinical history of

treatment suppressed autoimmune hepatitis. On the Ludwig scale these changes

are assessed as grade 2, stage 2.

>

> My questions:

>

> Does this biopsy explain why I am having all these problems?

> If I am in stage 2 in 8 years, about how many years do I have more to live?

>

> Thank you,

>

> Rani

>

>

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[Guest guest]

Hello!

I had a problem similar to yours while taking prendisone and imuran. When I

was able to go off the prendisone, and only be on imuran, my hair started

growing in much fuller. My hair is one of the few things I enjoy about the

way I look. I was also regrowing it to donate. I was only about two inches

away, but then I had to give up because my whole pony tail was so tiny

around. Hair was falling out everywhere and clogging all of our bathroom

sinks! I would even notice myself shedding on my students! I went to the

hair salon and had it chopped short. (I cried the whole time. How

ridiculous, I have never cried about any problem from AIH except my hair!)

My hairdresser helped me find a more flattering solution then what I had.

But now it is doing much better. Good luck!

Marsha

[ ] Re: AIH with Grade 2, Stage 2

Sorry I can't create a new topic there is some application that

groups wants me to open and I have never had this problem before so I

don't know what's up

I have been on treatment for AIH for almost five months now

and my doctor just had me increase Imuran almost a month ago in response

to decreasing prednisone and the past few weeks i have noticed my hair is

falling out in excessive amounts more then my normal shedding, I remember

reading that a side effect of Imuran was hair loss what do I do, does anyone

have any hair loss experiences? is there anything I can do? I am worried

that my hair will become really thin and I will have to wear a hat or shave

my head, right now my hair is thinner then my normal but is still fine but

at this hair loss rate I don't know I am worried I love my hair any

experiences or advice comments would be great

sincerely

>

> I agree completely with Harper's response. Many of us would be pleased

to have your mild biopsy results, esp. after you were initially very ill.

Not that any of us is pleased to have AIH, naturally. Of course I don't

know exactly when you had your latest biopsy or how long you have been

taking Imuran. Some have side effects from that med.

>

> Progression is different for everyone. If your blood tests results are

close to or within normal range now that could even mean remission is in

your future. AIH is one of the few autoimmune liver diseases where that is

possible.

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> I also throw some possibilities out here given what you are

experiencing - dehydration, celiac's, fibromyalgia.......I believe liver

disease can lead to muscle wasting and weakness as well as problems with

concentration. I believe that dehydration can lead to weakness; that Fibro

can cause all types of pains, that Celiac's could cause your response to

meals, You may have more than one thing going on here. Even age can be a

factor.

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> However, I am not a medical professional and speculations are just that,

so nothing can take the place of Harper's advice:

> " It sounds as if you need to sit down with your doctor and ask to have

all this explained thoroughly and in terms that a layperson can understand. "

>

> I hope you have a good support system, and a good relationship and open

communication with your liver doc. I wish you the best of luck, Rani.

Please keep us posted.

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> Kay_TX, 61yo, AIH/PBC

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