Re: Laparoscopy - J.

[Guest guest]

Geri,

Thanks for responding. I dont know what their plan is for sure. He said

something about checking my meds for drug induced liver problem. He started

me on lipacor to lower my cholesterol and triglycerides. I think he is

befuddled (is that a word)? Me, I am just plain confused. I like your idea

of taking meds before the damage, but I have to have them prescribed. Dont

know how he will like me telling him what to do. Do you know a tactful way

to do that?

J

>From: Geri Spang <spangs@...>

>Reply- onelist

> onelist

>Subject: Re: [ ] Laparoscopy - J.

>Date: Wed, 04 Aug 1999 13:29:06 -0700

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>From: Geri Spang <spangs@...>

>

>,

>I've been told that " fatty " liver is what becomes a cirrhotic liver. In

>other words, the fat (the mind boggles, imagining what THAT looks like)

>turns into scar tissue/i.e. cirrhosis. Leaping to unqualified conclusions,

>that would seem to me to mean that the biopsy was done pre-cirrhosis, which

>is good. Especially if they can stop the process now, or at least slow it

>down a lot. All of my ultrasounds, CT scans, etc., have shown fatty liver

>since before I had my liver biopsy and before I was diagnosed with AIH.

>

>When I was hospitalized due to complete stoppage of gallbladder and bile

>duct functioning, my bilirubin was very high. However, there turned out to

>be nothing wrong with either of them. It was explained to me that because

>of poor liver function, the gallbladder and bile ducts were not able to do

>their jobs. Whatever they did in the hospital (and I wish I knew what it

>was) resulted in complete elimination of the excess fluids in my abdomen

>and the severe pedal edema I had at the time. My bilirubin has never been

>elevated again, in a year and a half. I was not, incidentally, ever

>visibly jaundiced. I came out of the hospital almost 35 lbs. lighter than

>I was 5 days earlier.

>

>I was lucky because the doctor who hospitalized me put together a team who

>did all the right things, apparently. Instead of one doctor reaching

>conclusions, there was mutual involvement in the diagnosis. First

>diagnosis by a GI doctor was PBC (with a dire prediction that I had 2-5

>years to live, if I was lucky) but that was modified by two different

>Hepatologists to AIH. I was evaluated for transplant but because I've

>responded so well to the combination of Imuran and Prednisone, I'm now in

>almost complete remission. My labs are nearly normal except for GGTP,

>which confirms that I do have cirrhosis, but there's no inflammation. My

>liver is still " fatty " according to an ultrasound a few months ago.

>

>In my case, I have no other complications. I now wonder if I'm the

>exception rather than the rule since so many people who post here seem to

>have other autoimmune diseases. Also, the prognosis for AIH people is not

>always the same. Some don't respond well to the meds, some don't respond

>at all and others seem to spontaneously improve. This is basically what my

>Hepatologist told me recently.

>

>I know what I'd do in your situation, but each of us has to make our own

>decisions. I'd go along with a treatment program of Imuran and Prednisone,

>assuming that's the plan. My doctors believe that it's better to start on

>lower dosages of Imuran and increase it if necessary rather than start

>high. Also, the Hepatologist decreased the Prednisone that the GI doctor

>started me on, from 40 mgs. down to 30 mgs. and after the first signs of

>positive response, dropped down to 20 mgs. where I stayed for several

>months, then began a gradual decrease ( " gradual " is a VERY important term

>here!) down to 5 mgs. where apparently I'll stay forever, assuming nothing

>goes wrong. There seem to be several schools of thought on treatment

>programs and dosages and I read somewhere that each has it's merits.

>

>My own opinion is that it's better to take the meds before it becomes a

>life or death situation rather than not take them then later try to undo

>damage that can never really be undone.

>

>Above all, you have to have doctors you can trust. I grit my teeth when I

>say that because sometimes it's not so easy to like the doctors who are

>most qualified to treat you. And, bear in mind that none of us are medical

>professionals (Hepatologists) so all we can offer is a wealth of experience

>but no real medical expertise to back up what we've concluded.

>

>Off my soapbox mode - how do you feel, besides scared half to death? The

>darned meds will keep you feeling lousy for a long time, but when I feel

>discouraged about that (I never really feel normal and healthy anymore) I

>remember how very sick I was without the meds. The price we pay to stay

>alive is worth it, but it takes some powerful will to live and attitude

>adjustments!

>

>Hope you are okay. What's the next step, or did they say yet?

>

>Take care,

>Geri

>

>

>---------------------------

[Guest guest]

,

I've been told that " fatty " liver is what becomes a cirrhotic liver. In

other words, the fat (the mind boggles, imagining what THAT looks like)

turns into scar tissue/i.e. cirrhosis. Leaping to unqualified conclusions,

that would seem to me to mean that the biopsy was done pre-cirrhosis, which

is good. Especially if they can stop the process now, or at least slow it

down a lot. All of my ultrasounds, CT scans, etc., have shown fatty liver

since before I had my liver biopsy and before I was diagnosed with AIH.

When I was hospitalized due to complete stoppage of gallbladder and bile

duct functioning, my bilirubin was very high. However, there turned out to

be nothing wrong with either of them. It was explained to me that because

of poor liver function, the gallbladder and bile ducts were not able to do

their jobs. Whatever they did in the hospital (and I wish I knew what it

was) resulted in complete elimination of the excess fluids in my abdomen

and the severe pedal edema I had at the time. My bilirubin has never been

elevated again, in a year and a half. I was not, incidentally, ever

visibly jaundiced. I came out of the hospital almost 35 lbs. lighter than

I was 5 days earlier.

I was lucky because the doctor who hospitalized me put together a team who

did all the right things, apparently. Instead of one doctor reaching

conclusions, there was mutual involvement in the diagnosis. First

diagnosis by a GI doctor was PBC (with a dire prediction that I had 2-5

years to live, if I was lucky) but that was modified by two different

Hepatologists to AIH. I was evaluated for transplant but because I've

responded so well to the combination of Imuran and Prednisone, I'm now in

almost complete remission. My labs are nearly normal except for GGTP,

which confirms that I do have cirrhosis, but there's no inflammation. My

liver is still " fatty " according to an ultrasound a few months ago.

In my case, I have no other complications. I now wonder if I'm the

exception rather than the rule since so many people who post here seem to

have other autoimmune diseases. Also, the prognosis for AIH people is not

always the same. Some don't respond well to the meds, some don't respond

at all and others seem to spontaneously improve. This is basically what my

Hepatologist told me recently.

I know what I'd do in your situation, but each of us has to make our own

decisions. I'd go along with a treatment program of Imuran and Prednisone,

assuming that's the plan. My doctors believe that it's better to start on

lower dosages of Imuran and increase it if necessary rather than start

high. Also, the Hepatologist decreased the Prednisone that the GI doctor

started me on, from 40 mgs. down to 30 mgs. and after the first signs of

positive response, dropped down to 20 mgs. where I stayed for several

months, then began a gradual decrease ( " gradual " is a VERY important term

here!) down to 5 mgs. where apparently I'll stay forever, assuming nothing

goes wrong. There seem to be several schools of thought on treatment

programs and dosages and I read somewhere that each has it's merits.

My own opinion is that it's better to take the meds before it becomes a

life or death situation rather than not take them then later try to undo

damage that can never really be undone.

Above all, you have to have doctors you can trust. I grit my teeth when I

say that because sometimes it's not so easy to like the doctors who are

most qualified to treat you. And, bear in mind that none of us are medical

professionals (Hepatologists) so all we can offer is a wealth of experience

but no real medical expertise to back up what we've concluded.

Off my soapbox mode - how do you feel, besides scared half to death? The

darned meds will keep you feeling lousy for a long time, but when I feel

discouraged about that (I never really feel normal and healthy anymore) I

remember how very sick I was without the meds. The price we pay to stay

alive is worth it, but it takes some powerful will to live and attitude

adjustments!

Hope you are okay. What's the next step, or did they say yet?

Take care,

Geri

[Guest guest]

Geri, I feel you are right about the meds and stuff. I think a person is

better off taking meds if they work and holding off worse problems. I also

have found that people just don't understand that we don't feel all that great

most of us. I can make plans in the morning to do something and by the

afternoon not feel well enough to do it. Friends and family have a hard time

with it. I feel they are trying but really don't have a clue. Like with a

cold or flu you get over it and it is done. This you don't. I am tired of

explaining it to people, but I guess I have to continue on! Lynn AIH

Geri Spang wrote:

> From: Geri Spang <spangs@...>

>

> ,

> I've been told that " fatty " liver is what becomes a cirrhotic liver. In

> other words, the fat (the mind boggles, imagining what THAT looks like)

> turns into scar tissue/i.e. cirrhosis. Leaping to unqualified conclusions,

> that would seem to me to mean that the biopsy was done pre-cirrhosis, which

> is good. Especially if they can stop the process now, or at least slow it

> down a lot. All of my ultrasounds, CT scans, etc., have shown fatty liver

> since before I had my liver biopsy and before I was diagnosed with AIH.

>

> When I was hospitalized due to complete stoppage of gallbladder and bile

> duct functioning, my bilirubin was very high. However, there turned out to

> be nothing wrong with either of them. It was explained to me that because

> of poor liver function, the gallbladder and bile ducts were not able to do

> their jobs. Whatever they did in the hospital (and I wish I knew what it

> was) resulted in complete elimination of the excess fluids in my abdomen

> and the severe pedal edema I had at the time. My bilirubin has never been

> elevated again, in a year and a half. I was not, incidentally, ever

> visibly jaundiced. I came out of the hospital almost 35 lbs. lighter than

> I was 5 days earlier.

>

> I was lucky because the doctor who hospitalized me put together a team who

> did all the right things, apparently. Instead of one doctor reaching

> conclusions, there was mutual involvement in the diagnosis. First

> diagnosis by a GI doctor was PBC (with a dire prediction that I had 2-5

> years to live, if I was lucky) but that was modified by two different

> Hepatologists to AIH. I was evaluated for transplant but because I've

> responded so well to the combination of Imuran and Prednisone, I'm now in

> almost complete remission. My labs are nearly normal except for GGTP,

> which confirms that I do have cirrhosis, but there's no inflammation. My

> liver is still " fatty " according to an ultrasound a few months ago.

>

> In my case, I have no other complications. I now wonder if I'm the

> exception rather than the rule since so many people who post here seem to

> have other autoimmune diseases. Also, the prognosis for AIH people is not

> always the same. Some don't respond well to the meds, some don't respond

> at all and others seem to spontaneously improve. This is basically what my

> Hepatologist told me recently.

>

> I know what I'd do in your situation, but each of us has to make our own

> decisions. I'd go along with a treatment program of Imuran and Prednisone,

> assuming that's the plan. My doctors believe that it's better to start on

> lower dosages of Imuran and increase it if necessary rather than start

> high. Also, the Hepatologist decreased the Prednisone that the GI doctor

> started me on, from 40 mgs. down to 30 mgs. and after the first signs of

> positive response, dropped down to 20 mgs. where I stayed for several

> months, then began a gradual decrease ( " gradual " is a VERY important term

> here!) down to 5 mgs. where apparently I'll stay forever, assuming nothing

> goes wrong. There seem to be several schools of thought on treatment

> programs and dosages and I read somewhere that each has it's merits.

>

> My own opinion is that it's better to take the meds before it becomes a

> life or death situation rather than not take them then later try to undo

> damage that can never really be undone.

>

> Above all, you have to have doctors you can trust. I grit my teeth when I

> say that because sometimes it's not so easy to like the doctors who are

> most qualified to treat you. And, bear in mind that none of us are medical

> professionals (Hepatologists) so all we can offer is a wealth of experience

> but no real medical expertise to back up what we've concluded.

>

> Off my soapbox mode - how do you feel, besides scared half to death? The

> darned meds will keep you feeling lousy for a long time, but when I feel

> discouraged about that (I never really feel normal and healthy anymore) I

> remember how very sick I was without the meds. The price we pay to stay

> alive is worth it, but it takes some powerful will to live and attitude

> adjustments!

>

> Hope you are okay. What's the next step, or did they say yet?

>

> Take care,

> Geri

>

> ---------------------------

[Guest guest]

Dear Lyn

I know how you feel, when I was in hospital and the colour of caramel

custard my family were genuinely concerned - and when I was at my lowest

supported me and made me stay in the Hospital until they'd finished testing

for every thing under the sun!

As soon as I started my medication and the colour died down and I became a

pink person again, the totalerance began to waver. I get the impression

they think i'm wallowing in self pity and am just being lazy, I do get

frustrated, something simple like the ironing seems impossible right now - I

have good days and bad days - gradually more good than bad. I know I don't

know alot about AIH, but even what I try to explain seems to go in one ear

and out the other???

Oh well, one of these days i'm sure they'll get the message!!! Hang in

there!!

Best Wishes

Eileen AIH

25/ UK

Re: [ ] Laparoscopy - J.

> From: Lynn <CEN32195@...>

>

> Geri, I feel you are right about the meds and stuff. I think a person is

> better off taking meds if they work and holding off worse problems. I

also

> have found that people just don't understand that we don't feel all that

great

> most of us. I can make plans in the morning to do something and by the

> afternoon not feel well enough to do it. Friends and family have a hard

time

> with it. I feel they are trying but really don't have a clue. Like with

a

> cold or flu you get over it and it is done. This you don't. I am tired

of

> explaining it to people, but I guess I have to continue on! Lynn AIH

>

> Geri Spang wrote:

>

> > From: Geri Spang <spangs@...>

> >

> > ,

> > I've been told that " fatty " liver is what becomes a cirrhotic liver. In

> > other words, the fat (the mind boggles, imagining what THAT looks like)

> > turns into scar tissue/i.e. cirrhosis. Leaping to unqualified

conclusions,

> > that would seem to me to mean that the biopsy was done pre-cirrhosis,

which

> > is good. Especially if they can stop the process now, or at least slow

it

> > down a lot. All of my ultrasounds, CT scans, etc., have shown fatty

liver

> > since before I had my liver biopsy and before I was diagnosed with AIH.

> >

> > When I was hospitalized due to complete stoppage of gallbladder and bile

> > duct functioning, my bilirubin was very high. However, there turned out

to

> > be nothing wrong with either of them. It was explained to me that

because

> > of poor liver function, the gallbladder and bile ducts were not able to

do

> > their jobs. Whatever they did in the hospital (and I wish I knew what

it

> > was) resulted in complete elimination of the excess fluids in my

abdomen

> > and the severe pedal edema I had at the time. My bilirubin has never

been

> > elevated again, in a year and a half. I was not, incidentally, ever

> > visibly jaundiced. I came out of the hospital almost 35 lbs. lighter

than

> > I was 5 days earlier.

> >

> > I was lucky because the doctor who hospitalized me put together a team

who

> > did all the right things, apparently. Instead of one doctor reaching

> > conclusions, there was mutual involvement in the diagnosis. First

> > diagnosis by a GI doctor was PBC (with a dire prediction that I had 2-5

> > years to live, if I was lucky) but that was modified by two different

> > Hepatologists to AIH. I was evaluated for transplant but because I've

> > responded so well to the combination of Imuran and Prednisone, I'm now

in

> > almost complete remission. My labs are nearly normal except for GGTP,

> > which confirms that I do have cirrhosis, but there's no inflammation.

My

> > liver is still " fatty " according to an ultrasound a few months ago.

> >

> > In my case, I have no other complications. I now wonder if I'm the

> > exception rather than the rule since so many people who post here seem

to

> > have other autoimmune diseases. Also, the prognosis for AIH people is

not

> > always the same. Some don't respond well to the meds, some don't

respond

> > at all and others seem to spontaneously improve. This is basically what

my

> > Hepatologist told me recently.

> >

> > I know what I'd do in your situation, but each of us has to make our own

> > decisions. I'd go along with a treatment program of Imuran and

Prednisone,

> > assuming that's the plan. My doctors believe that it's better to start

on

> > lower dosages of Imuran and increase it if necessary rather than start

> > high. Also, the Hepatologist decreased the Prednisone that the GI

doctor

> > started me on, from 40 mgs. down to 30 mgs. and after the first signs of

> > positive response, dropped down to 20 mgs. where I stayed for several

> > months, then began a gradual decrease ( " gradual " is a VERY important

term

> > here!) down to 5 mgs. where apparently I'll stay forever, assuming

nothing

> > goes wrong. There seem to be several schools of thought on treatment

> > programs and dosages and I read somewhere that each has it's merits.

> >

> > My own opinion is that it's better to take the meds before it becomes a

> > life or death situation rather than not take them then later try to undo

> > damage that can never really be undone.

> >

> > Above all, you have to have doctors you can trust. I grit my teeth when

I

> > say that because sometimes it's not so easy to like the doctors who are

> > most qualified to treat you. And, bear in mind that none of us are

medical

> > professionals (Hepatologists) so all we can offer is a wealth of

experience

> > but no real medical expertise to back up what we've concluded.

> >

> > Off my soapbox mode - how do you feel, besides scared half to death?

The

> > darned meds will keep you feeling lousy for a long time, but when I feel

> > discouraged about that (I never really feel normal and healthy anymore)

I

> > remember how very sick I was without the meds. The price we pay to stay

> > alive is worth it, but it takes some powerful will to live and attitude

> > adjustments!

> >

> > Hope you are okay. What's the next step, or did they say yet?

> >

> > Take care,

> > Geri

> >

> > ---------------------------

[Guest guest]

SUSAN J:

When I went into the doctors office in October 1997, yellow and dragging my

butt the first thing he did was take me off all of my drugs (about 4 kinds)

and tested my blood for three weeks until it showed that it was not the

drugs. Then they did a biopsy and found out that I had AIH.

Sue AIH

Wisconsin

[Guest guest]

,

I thought that Lipacor was contraindicated for people with liver disease?

My husband is going to start to take it tomorrow and his cardiologist

wouldn't prescribe it until he'd had a LFT. He's been taking Zocor and his

doctor wanted him to take Lipacor instead.

My cholesterol and triglycerides are almost always elevated but I notice

that they go down when I have a fasting test - though I'm never told to

fast before I have a test. They don't run terribly high, but higher than

my husband's have ever been and he's the one supposedly with a cholesterol

problem. My Hepatologist isn't concerned at all with my elevations. My

glucose is also always high. But all of these things go with liver

disease, I thought?

How to tell your doctor what meds you should take? Well, you could dash

into his office very excited like you just made this monumental discovery

and hand him downloaded information from ALF or some other indisputable

source and say, " I'd like to give this a try to see if it brings my labs

down. " What's the worst thing that could happen? You wouldn't improve?

But on the other hand, if you were responsive to moderate pred and Imuran

treatment, there you go! I'd just tell him that I wanted to take a chance,

just to see if it might work. It sounds like you have a good rapport with

your doctor, but no one can be all things to all people and this might be

an area where he simply isn't up to speed. AIH is a rare disease, after

all, so it's not his fault (though it wouldn't hurt him to do a little

research on the subject.)

Take care,

Geri

[Guest guest]

J

I think the use of Lipitor is contraindicated for use when you have liver

problems.

Re: [ ] Laparoscopy - J.

> >Date: Wed, 04 Aug 1999 13:29:06 -0700

> >MIME-Version: 1.0

> >From errors-165537-4729-shireen42 Wed Aug 04 13:33:42 1999

> >Received: from [209.207.135.253] by hotmail.com (2.1) with ESMTP id

> >MHotMailB971EEA50134D82197B4D1CF87FD393F0; Wed Aug 04 13:33:42 1999

> >Received: (qmail 32021 invoked by alias); 4 Aug 1999 20:31:04 -0000

> >Received: (qmail 31736 invoked from network); 4 Aug 1999 20:30:53 -0000

> >Received: from unknown (HELO mtiwmhc03.worldnet.att.net) (204.127.131.38)

> >by pop.onelist.com with SMTP; 4 Aug 1999 20:30:53 -0000

> >Received: from worldnet ([208.252.201.155]) by mtiwmhc03.worldnet.att.net

> >(InterMail v03.02.07.07 118-134) with SMTP id

> ><19990804203107.IAPA12664@worldnet> for < onelist>;

Wed,

> >4 Aug 1999 20:31:07 +0000

> >Message-Id: <4.1.19990804124424.0094d8b0@...>

> >X-Sender: spangs@...

> >X-Mailer: QUALCOMM Windows Eudora Pro Version 4.1

> >In-Reply-<933779162.20564onelist>

> >Mailing-List: list onelist; contact

> > -owneronelist

> >Delivered-mailing list onelist

> >Precedence: bulk

> >List-Unsubscribe: <mailto: -unsubscribeONElist>

> >

> >From: Geri Spang <spangs@...>

> >

> >,

> >I've been told that " fatty " liver is what becomes a cirrhotic liver. In

> >other words, the fat (the mind boggles, imagining what THAT looks like)

> >turns into scar tissue/i.e. cirrhosis. Leaping to unqualified

conclusions,

> >that would seem to me to mean that the biopsy was done pre-cirrhosis,

which

> >is good. Especially if they can stop the process now, or at least slow

it

> >down a lot. All of my ultrasounds, CT scans, etc., have shown fatty

liver

> >since before I had my liver biopsy and before I was diagnosed with AIH.

> >

> >When I was hospitalized due to complete stoppage of gallbladder and bile

> >duct functioning, my bilirubin was very high. However, there turned out

to

> >be nothing wrong with either of them. It was explained to me that

because

> >of poor liver function, the gallbladder and bile ducts were not able to

do

> >their jobs. Whatever they did in the hospital (and I wish I knew what it

> >was) resulted in complete elimination of the excess fluids in my abdomen

> >and the severe pedal edema I had at the time. My bilirubin has never

been

> >elevated again, in a year and a half. I was not, incidentally, ever

> >visibly jaundiced. I came out of the hospital almost 35 lbs. lighter

than

> >I was 5 days earlier.

> >

> >I was lucky because the doctor who hospitalized me put together a team

who

> >did all the right things, apparently. Instead of one doctor reaching

> >conclusions, there was mutual involvement in the diagnosis. First

> >diagnosis by a GI doctor was PBC (with a dire prediction that I had 2-5

> >years to live, if I was lucky) but that was modified by two different

> >Hepatologists to AIH. I was evaluated for transplant but because I've

> >responded so well to the combination of Imuran and Prednisone, I'm now in

> >almost complete remission. My labs are nearly normal except for GGTP,

> >which confirms that I do have cirrhosis, but there's no inflammation. My

> >liver is still " fatty " according to an ultrasound a few months ago.

> >

> >In my case, I have no other complications. I now wonder if I'm the

> >exception rather than the rule since so many people who post here seem to

> >have other autoimmune diseases. Also, the prognosis for AIH people is

not

> >always the same. Some don't respond well to the meds, some don't respond

> >at all and others seem to spontaneously improve. This is basically what

my

> >Hepatologist told me recently.

> >

> >I know what I'd do in your situation, but each of us has to make our own

> >decisions. I'd go along with a treatment program of Imuran and

Prednisone,

> >assuming that's the plan. My doctors believe that it's better to start

on

> >lower dosages of Imuran and increase it if necessary rather than start

> >high. Also, the Hepatologist decreased the Prednisone that the GI doctor

> >started me on, from 40 mgs. down to 30 mgs. and after the first signs of

> >positive response, dropped down to 20 mgs. where I stayed for several

> >months, then began a gradual decrease ( " gradual " is a VERY important term

> >here!) down to 5 mgs. where apparently I'll stay forever, assuming

nothing

> >goes wrong. There seem to be several schools of thought on treatment

> >programs and dosages and I read somewhere that each has it's merits.

> >

> >My own opinion is that it's better to take the meds before it becomes a

> >life or death situation rather than not take them then later try to undo

> >damage that can never really be undone.

> >

> >Above all, you have to have doctors you can trust. I grit my teeth when

I

> >say that because sometimes it's not so easy to like the doctors who are

> >most qualified to treat you. And, bear in mind that none of us are

medical

> >professionals (Hepatologists) so all we can offer is a wealth of

experience

> >but no real medical expertise to back up what we've concluded.

> >

> >Off my soapbox mode - how do you feel, besides scared half to death? The

> >darned meds will keep you feeling lousy for a long time, but when I feel

> >discouraged about that (I never really feel normal and healthy anymore) I

> >remember how very sick I was without the meds. The price we pay to stay

> >alive is worth it, but it takes some powerful will to live and attitude

> >adjustments!

> >

> >Hope you are okay. What's the next step, or did they say yet?

> >

> >Take care,

> >Geri

> >

> >

> >---------------------------