RE: New to the Group-AIH 7 years

October 31, 2002

Welcome Deborah!

Cheryl

October 31, 2002

Debby,

My name is Ron. I just signed up for this support group on , but new to this liver disease thing.

Why are there only women responding?

What is AIH? Is it a female disease? I'm confused? More so lately, ya know.

Ammonia build up I think. Drift factor.

I am in Stage 4 of Hepatitis 'C', Portal Cirrhosis. Waiting for my medicine to come in the mail. Peg-Intron & Ribavirin. Have to take em for a year.

Doc at the VA says its kinda like being on Chemo?

He also said I have anywhere from 2 days to 5 years to live, without medicine or liver transplant. Then I could add another 5 years, maybe?!

Sounds pretty iffy, huh?

Anyway, maybe you could clear this support group thing up for me, or if I need to join a different kind group. I'd like to have the support before I start the medicine, cause I hear you get pretty sick and moody.

Thanks,

Ron

Re: [ ] New to the Group-AIH 7 years

Hello all - just joined the group a few days ago and have been browsing the postings. Finding it very encouraging to be among so many strong and confident folks. My dx came in 1995 after a week of tests during a full-blown attack of hep... all labs out of control, jaundice, and everything that goes with it. After about 6 months of prednisone, my doc started imuran and increased it while decreasing prednisone. Was off prednisone completely in about a year from onset, and have only had to use again for a short while (a month) during a high stress period where labs began to slip. So I feel pretty lucky that I haven't had to deal with the miserable side effects of Prenisone, although it took a LONG time to lose the weight that came with it initially. Stabilized for several years at 150 mg of Imuran, but went to 200 about 2 years ago as labs started to move slightly upward. Been able to maintain a normal life ... if you call being a workaholic normal! But just this month have hit a new glitch... squamous cell carcinoma - skin cancer. While typically, this is a very curable condition when caught early, my particular cancer seemed to come on quickly and had an aggressive growth rate. Had the lesion surgically removed yesterday, and will know if we were successful in getting it all next week. But of course, I can't help wondering how the Imuran might have enabled this condition. All of this just 2 weeks before moving to a new area, where I'm thinking a less stressful lifestyle will be a really good thing. So time to connect with new local doctors (a challenge in itself) , but I'll maintain my relationship with my specialists in Dallas. But as I worried over this last skin cancer thing, I remembered.... none of us knows (AIH or not) that we won't get hit by a truck tomorrow!!! So seize the day, enjoy your life, and thank God for the opportunity! flatcat9@... wrote: Lori, I'm very glad to hear that 's doing well. I think of her often. Adriene, I can't answer all your questions about Prednisone and liver readings, but here are a few thoughts. Many of us do reach normal readings. For me, it took perhaps a year; I don't remember exactly. My levels were very, very high originally. I have not recovered my "normal" resilience; I feel well and able, but I burn out very quickly when I exert myself. This is probably, in part, because I haven't yet lost the 40 pounds I gained in six weeks of Prednisone. Very few people that I know of take ***only*** Prednisone, without Imuran, or Imuran without Prednisone. Almost invariably, from what I've read, people take the two together. The exceptions may be those who can't tolerate one or the other. You ask about PMS; most of us find ourselves short-tempered, impatient, and generally intolerant at the higher doses of Prednisone, regardless of the time of the month! I'm down from 80 mg to 5 mg, and I still feel less even-tempered than I once was, but that may be from bad habits I picked up at the high doses! Point out to your family and friends that your irritableness is temporary and that it isn't really directed at them. Thank goodness, my husband has a thick skin and now insists I was never rude! But I know I was. On hepatitis vaccines -- The hepatology area at Kaiser in San Francisco insisted that I get Hepatitis A and B vaccines early on in AIH. They viewed the hepatitis vaccines for people with AIH as routine and didn't mention any problem with taking Prednisone. Since then, people in the group say they have been told that Prednisone use makes the vaccines risky. I don't know. This is something to discuss very thoroughly with your doctor. Harper

October 31, 2002

Ron, this is an AIH - autoimmune hepatitis support group. We all have autoimmune hep, not hepC. However, some people with HepC have joined and have gotten some information from this group.

However, there are some very good support groups in Delphi that are an excellent support for HepC patients.

Indeed, you will have to do the peg tx for at least a year. There are many sides from it, but you would be best to find the delphi support groups to get information from them. They have lots of chats and also lots of message boards. They will also be able to point you to the any trials if you qualify for them.

Good luck. I know you could get some info from this group, but with just beginning tx with peg, then you might want to talk with those who are on the tx or have been through it.

Also, AIH is not just a woman's disease. We have several men who are in this support group. They will pop up eventually.

Hope this helps....debby

Re: [ ] New to the Group-AIH 7 years

Hello all - just joined the group a few days ago and have been browsing the postings. Finding it very encouraging to be among so many strong and confident folks. My dx came in 1995 after a week of tests during a full-blown attack of hep... all labs out of control, jaundice, and everything that goes with it. After about 6 months of prednisone, my doc started imuran and increased it while decreasing prednisone. Was off prednisone completely in about a year from onset, and have only had to use again for a short while (a month) during a high stress period where labs began to slip. So I feel pretty lucky that I haven't had to deal with the miserable side effects of Prenisone, although it took a LONG time to lose the weight that came with it initially. Stabilized for several years at 150 mg of Imuran, but went to 200 about 2 years ago as labs started to move slightly upward. Been able to maintain a normal life ... if you call being a workaholic normal! But just this month have hit a new glitch... squamous cell carcinoma - skin cancer. While typically, this is a very curable condition when caught early, my particular cancer seemed to come on quickly and had an aggressive growth rate. Had the lesion surgically removed yesterday, and will know if we were successful in getting it all next week. But of course, I can't help wondering how the Imuran might have enabled this condition. All of this just 2 weeks before moving to a new area, where I'm thinking a less stressful lifestyle will be a really good thing. So time to connect with new local doctors (a challenge in itself) , but I'll maintain my relationship with my specialists in Dallas. But as I worried over this last skin cancer thing, I remembered.... none of us knows (AIH or not) that we won't get hit by a truck tomorrow!!! So seize the day, enjoy your life, and thank God for the opportunity! flatcat9@... wrote: Lori, I'm very glad to hear that 's doing well. I think of her often. Adriene, I can't answer all your questions about Prednisone and liver readings, but here are a few thoughts. Many of us do reach normal readings. For me, it took perhaps a year; I don't remember exactly. My levels were very, very high originally. I have not recovered my "normal" resilience; I feel well and able, but I burn out very quickly when I exert myself. This is probably, in part, because I haven't yet lost the 40 pounds I gained in six weeks of Prednisone. Very few people that I know of take ***only*** Prednisone, without Imuran, or Imuran without Prednisone. Almost invariably, from what I've read, people take the two together. The exceptions may be those who can't tolerate one or the other. You ask about PMS; most of us find ourselves short-tempered, impatient, and generally intolerant at the higher doses of Prednisone, regardless of the time of the month! I'm down from 80 mg to 5 mg, and I still feel less even-tempered than I once was, but that may be from bad habits I picked up at the high doses! Point out to your family and friends that your irritableness is temporary and that it isn't really directed at them. Thank goodness, my husband has a thick skin and now insists I was never rude! But I know I was. On hepatitis vaccines -- The hepatology area at Kaiser in San Francisco insisted that I get Hepatitis A and B vaccines early on in AIH. They viewed the hepatitis vaccines for people with AIH as routine and didn't mention any problem with taking Prednisone. Since then, people in the group say they have been told that Prednisone use makes the vaccines risky. I don't know. This is something to discuss very thoroughly with your doctor. Harper

October 31, 2002

,

The only shellfish that my hepatologist in New Orleans said definitely to stay away from is oysters, and that is because there is some kind of hepatitis that you can get from oysters. He said that people like us with impaired livers might not survive a bout of this hepatitis. He also advised immunizations for Hepatitis A and Hepatitis B, as well as pneumonia and flu shots. Then I read in a couple of different sources that we should avoid shellfish in general, but this recommendation did not come from any of my doctors. The doctor in New Orleans just scared me so much about the oysters that I am afraid to eat ANY shellfish after running across that information in my research.

Another question that I have is this: I have seen AIH referred to in some of these posts as a very rare disease. Does anyone have any statistics on exactly how rare it is? How about you, Jerry?

Thanks,

Layne

-----Original Message-----From: MKANTZLE@... [mailto:MKANTZLE@...]Sent: Thursday, October 31, 2002 8:03 PM Subject: Re: [ ] New to the Group-AIH 7 yearsLayne,I too have cirrhosis. The only thing you have not mentioned that they told me to limit was red meat. I love shellfish also and just use common sense. I make sure it is cooked well and do not eat anything raw. I don't live in the same area as you so the availability is not what you have. An occasional shrimp or crab dinner is not something I'm willing to give up. I've given up so much. I'm just smart about how its cooked. That's just me though. Listen to your doctors.

October 31, 2002

Dear Layne,

Do they mean raw seafood? Like oysters? Or sushi?

If it’s cooked, it should be OK. I

have been told to avoid my favorites: raw oysters and sushi, because there is a

chance of contracting Hepatitis C from it. I lived in New Orleans for a few years (1995-2001) and loved the food there. It is

incredible! Now that I’m back in Chicago, I miss the fabulous cooking in NOLA, ie:

Commander’s Palace, Broussards, Mr. B’s,

Mother’s, Bacco, Arnaud’s……

Fortunately I have stocked up on cookbooks

from there, have to learn to do it myself, which will be an impossible feat.

I saw Ochsner’s

eye patients at L & B Laboratories there, where I worked as an ocularist. What a small world it is!

Hope you are recovering rapidly. Seems like you’re on a lot of medicine. Are you

feeling hyper from the prednisone?

Take care,

AIH Feb 2002

Re: [ ] New

to the Group-AIH 7 years

Welcome Deborah!

I'm new to the group too and I've read so many great posts and have learned so

much. I've experienced a lot of strength and hope through some of these

people. And to know I'm not alone in this means very much to me.

Terri

AIH 10-11-02

Group

Rules

1. Please no religious, political, race or sexual

preference discussions.

2. NO slamming of other members, advertising or

vulgarity. Thank you!

To UNsubscribe send a blank e-mail to

-unsubscribeegroups

Your

use of is subject to the Terms of Service.

October 31, 2002

,

I was in Chicago last fall on a business trip. Our hotel was downtown, and it was COLD up there. I bet you miss the heat down south (I know.....but not the humidity). The doctor at Ochsner's didn't specify raw or cooked oysters, but he might have meant raw and didn't say. I'm glad you mentioned sushi because we have some consultants that have been working with me on a system install for over a year, and every time their boss is in town he swears he is not going to complete the project until he gets me to try sushi at a local Japanese restaurant! I don't think that he would have ever gotten me to try it, but now I have a ligitimate excuse!

Yes, I am hyper from the prednisone, but not nearly as bad as when I was on 40mg. Tomorrow I will reduce my dosage by 2.5mg which will take me to 20mg. I am reducing 2.5mg each week 'till I get down to 10mg. I don't know what the plan is after that point.

Thank you so much for answering my post. It does help to know that we are not alone in our situation, and that we are not the only ones searching for answers and shared experiences from others.

Goodbye for now,

Layne

RE: [ ] New to the Group-AIH 7 years

Deborah and Terri,

I am new to the group as well. I was diagnosed with AIH on September 4 of this year. Do either of you live near Mississippi? I live in south Mississippi, and was diagnosed at Ochsner's Clinic in New Orleans. I was started on 40mg of Prednisone and 75mg of Immuran. My LFT's came down almost as rapidly as my weight went up! I am tapering off the Prednisone now, but I will have to take the Immuran for the rest of my life. They might leave me on 5mg of Prednisone indefinitely as well. I don't know how I will lose all this weight! I am afraid to diet for fear of doing my liver even more damage (I already had cirrhosis when the AIH was detected). The only consistent advice I have gotten concerning dietary changes is to cut out salt and not to eat shellfish. I was a saltaholic pre AIH, and you automatically love shrimp, oysters, crab, and crab legs if you are from south Mississippi or Louisiana!

If anyone out there has some sound dietary advice I would appreciate it.

Thanks for being there,

Layne

Original Message-----From: IggyMomInTexas@... [mailto:IggyMomInTexas@...]Sent: Thursday, October 31, 2002 10:05 AM Subject: Re: [ ] New to the Group-AIH 7 years

Welcome Deborah!I'm new to the group too and I've read so many great posts and have learned so much. I've experienced a lot of strength and hope through some of these people. And to know I'm not alone in this means very much to me.TerriAIH 10-11-02

October 31, 2002

O.K. my dear ladies...here is what I know so far........ the NIH

office of rare diseases classifies AIH as a rare disease ,,,defined as

less than 200,000 cases in the USA.. .. one of my files says that it

consttutes 11-23% of all cases of chronic hepatitis... the closest I can

find is that it affects .7 to 1.6 people in 100,000 but I'm not sure of

those stats. we all know that 70-80% of the cases are women.. mostly

young or postmenopausal... I have found that there is a link between

pregnacy and the trigering of the disease.

Here is my opinion... it is not as rare as some doctors think.... mainly

because of thier ignorance and mis-diagnosis or nondiagnosis. Until

recently many cases that were diagnosed as lupus may have actualy been

AIH (lupoid hepatitis) As we know it has become more well known in

recent years and more research is being done in it and PBC. I wouldn't

be surprised if someday it no longer be classified as rare,but there a

lot of people still out there in the medical fields that need some

catching up in education Many of us know more than some doctors.

Now....about shellfish... I know from personal experince that if one has

advanced liver disease shellfish and your liver don't mix. When I had

endstage cirrhosis I ate out one night with one of my daughters and we

had clams (long one of my favorites) had forgotten my gastro had warned

me to stay away as my liver may not handle them in its condition. Anyway

I got so sick that I thought I was puking up all of my insides and it

lasted all night even after I got the dry heaves.Oddly since my

transplant the same thing has happened whenever I had clams, lobster and

my very favorite crabs.altho I have tolerated shrimp. I'm going to look

into this and repor back.

. you are probably more likely to get Hep. A or B than hep C from

oysters.

There is a high incidence in former alcoholics of hep. c (??)

Love you all jerry

October 31, 2002

....you are right....in advanced liver disease (cirrhosis) you may

want to limit proteins from red meat as they arn't broken down as well

and could result in encephalopathy, it is bette to get your proteins

from vegies, however in early liver disease proteins are desirable.

Of course salt intake must be limitedif ascites appears. I'm not sure

about the shelfish but when I had cirrhosis I got deathly sick eating

it. However I seemed to be able to eat shrimp for some reason.

Take care of yourself.

love jerry

October 31, 2002

Welcome Debby...... you are so right!

Today is the only day we have....we can't worry about something that may

or may not happen. The only thing real is te moment. I've tried to live

that way since was given a second chance at life....

I;ve been on Prograf for 7 years and was diagnosed with multiple myeloma

5 years ago I forget I have it most the time, you just reminded me in

your post about skin cancer. Grant me the serenity to accept the things

I cannot change.

Glad to have you here,,,,

one day at a time........ jerry

November 1, 2002

In a message dated 11/1/02 8:32:40 AM Eastern Standard Time, legalasst@... writes:

.. I had been trying to eat chicken and

fish, with some shellfish (live on the FL gulf coast) to keep away from

fatty foods.

nne,

We used to vacation on the Florida Gulf Coast, closer to ville and Panama City Beach. I LOVE it there.

Cheryl

November 1, 2002

Geez, what to eat?!!! I do have cirrhosis with my AIH, and my gastro didn't

give me any dietary restrictions. I had been trying to eat chicken and

fish, with some shellfish (live on the FL gulf coast) to keep away from

fatty foods. But now the gastro is somewhat concerned about my red blood

cells, which are quite enlarged. This is not new, I was checked for this

about five years ago, and was told that they just " clump " together. But I

am pretty anemic right now and my clotting factor is not good. Soooo, I was

thinking I should be eating more red meat. Now I don't know what to eat. I

guess I'll wait for the new bloodwork to be done, and see the doc again on

Dec. 2nd to see what he thinks. So much to think about..... Thanks to you

Jerry for all of your research and knowledge, and to everyone for all of the

information. We are all a little bit different due to this disease, and yet

the same.

nne

Re: [ ] New to the Group-AIH 7 years

> ....you are right....in advanced liver disease (cirrhosis) you may

> want to limit proteins from red meat as they arn't broken down as well

> and could result in encephalopathy, it is bette to get your proteins

> from vegies, however in early liver disease proteins are desirable.

> Of course salt intake must be limitedif ascites appears. I'm not sure

> about the shelfish but when I had cirrhosis I got deathly sick eating

> it. However I seemed to be able to eat shrimp for some reason.

> Take care of yourself.

>

> love jerry

>

November 1, 2002

Hi Layne,

I live in Houston, but I was born in Ochsner's in New Orleans (almost

37 years ago)! Small world. Most of my extended family lives in the

Baton Rouge area.

My doc just said don't eat raw stuff (oysters) but cooked she thinks

it is ok. I guess you just have to be careful about certain

bacterias and, of course, viral hepatitis.

Other than that, just no alcohol is the only dietary restriction I

have. Normal healthy diet, of course, is the best approach.

Anyway, good luck and welcome to the group.

> Deborah and Terri,

>

> I am new to the group as well. I was diagnosed with AIH on

September 4 of

> this year. Do either of you live near Mississippi? I live in south

> Mississippi, and was diagnosed at Ochsner's Clinic in New Orleans.

I was

> started on 40mg of Prednisone and 75mg of Immuran. My LFT's came

down

> almost as rapidly as my weight went up! I am tapering off the

Prednisone

> now, but I will have to take the Immuran for the rest of my life.

They

> might leave me on 5mg of Prednisone indefinitely as well. I don't

know how

> I will lose all this weight! I am afraid to diet for fear of doing

my liver

> even more damage (I already had cirrhosis when the AIH was

detected). The

> only consistent advice I have gotten concerning dietary changes is

to cut

> out salt and not to eat shellfish. I was a saltaholic pre AIH, and

you

> automatically love shrimp, oysters, crab, and crab legs if you are

from

> south Mississippi or Louisiana!

> If anyone out there has some sound dietary advice I would

appreciate it.

>

> Thanks for being there,

> Layne

> Original Message-----

> From: IggyMomInTexas@a... [mailto:IggyMomInTexas@a...]

> Sent: Thursday, October 31, 2002 10:05 AM

> @y...

> Subject: Re: [ ] New to the Group-AIH 7 years

>

> Welcome Deborah!

>

> I'm new to the group too and I've read so many great posts and have

learned

> so much. I've experienced a lot of strength and hope through some

of these

> people. And to know I'm not alone in this means very much to me.

>

> Terri

> AIH 10-11-02

>

November 1, 2002

nne,

What part of Florida do you live in? I live about an hour from the Mississippi gulf coast. Do you know of any support groups near the Florida, Alabama, Mississippi gulf coast areas? It really is confusing about the shellfish, red meat, etc. Thanks, Jerry for your input. It was really helpful. We newcomers really appreciate your sharing your experience with us!