Re: new to group-need advice

[Guest guest]

>

> My sister has autoimmune liver disease and I am trying to find

more

> information to understand it. Is there a difference between

> autoimmune liver disease and autoimmune hepatitis?

> She was diagnosed in '98 originally with hep c

> now she says it autoimmune liver disease

> she's been fine until this summer and is currently taking a low

dose

> of prednisone and a chemo drug

> she seems very depressed and we all feel helpless. she does not

pick

> up or return most of her calls yet then emails her friends and

family

> that she is so alone and no one calls or visits her

> i'm thinking the medication may have something to do with this

> depression but we are at a loss of what support we can give. she

> seems to feel her situation is absolutely hopeless and has made

> funeral arrangements yet tells me the specialist says she can live

a

> productive life for years with medication.

> we are also concerned that she is not doing her part in managing

her

> illness in that she still smokes and doesn't try to get any

exercise.

> I need advice in how best to deal with this. I want to help but

> don't want to be held hostage to someone's possibly skewed view of

> her situation. I'd like to do something meaningful and proactive

for

> her and don't want to get caught up in an endless pity party.

This

> is my first step, to try to understand what she is going through

>

YOUR SISTER IS DEPRESSED THAT COMES FROM THE STEROIDS, THEY DO

WEIRD THINGS TO YOU. I WAS VERY DEPRESSED, ITS HARD TO COME TO TERMS

THAT YOU HAVE A LIFE THREATENING DISEASE AND YOUR NEVER GOING TO BE

THE SAME. BUT YOU GET OVER IT. MY DOC GRADUALLY TAPERED ME OFF

STEROIDS WHEN MY LIVER LEVELS WERE NORMAL. YOU REALLY DON'T FEEL

NORMAL TIL YOUR OFF THEM. I SUFFERED MEMORY LOSS ONLY TEMOPORARY. I

WAS SCATTERED BRAIN, SLEEPLESSNESS. I DIDN'T GAIN WEIGHT BUT MY FACE

WOULD GET PUFFY. I REALLY DIETED NOT TO GAIN. DOCS THOUGHT I HAD HEP

C BUT MY COUNTS WOULDN'T GO DOWN AND THEY WERE VERY HIGH AND I WAS

IN LIVER FAILURE, WHEN THEY FINALLY DISCOVERED I HAD AUTOIMMUNE

HEPATITIS. YOUR SISTER NEED LOTS OF SUPPORT ITS A RARE DISEASE TO

HAVE. NO ONE REALLY UNDERSTANDS UNLESS YOU HAVE IT. THE OTHER DRUG

SHE TAKES IS TO KEEP HER IMMUNE SYSTEM DOWN , I TAKE MERCAPTOPURINE

OR BETTER KNOWN AS 6MP. THIS CAUSES FATIGUE I HAVE TO TAKE A NAP

EVERYDAY . SOMETIMES I CANT CLEAN OR COOK OR ANYTHING I NEED HELP.

THATS WHEN FAMILY COMES IN. PEOPLE DON'T UNDERSTAND, BECAUSE YOU

DON'T LOOK SICK .ANOTHER GREAT PLACE TO GET INFO IS AT

AUTOIMMUNEHEPATITS.CO.UK/AIHFORUM.HTM I LEARNED ALOT FROM THIS

SITE,AND PEOPLE REALLY UNDERSTAND, MY NAME ON THAT WEBSITE IS

ALLEYCAT. I WAS DIAGNOSED IN JAN OF THIS YEAR.I ONLY JOINED RECENTLY

I JUST READ THE POSTS NOW I PARTICIPATE. I FEEL FOR YOUR SISTER ITS

NICE SHE HAS YOU. ON SMOKING THE REASON BESIDES OBVIOUS IS THAT THE

CHEMO DRUG KEEP YOUR IMMUNE SYSTEM DOWN AND SO DOES SMOKING SO YOU

ARE VUNERABLE TO DISEASES. I HOPED I HELPED ALITTLE. I HOPE SHE

DOING BETTER MY HEART GOES TO HER.

[Guest guest]

Thank you so much alley cat for listing that web site

autoimmunehepatitis.co.uk/ It is very well organized and gives some good info.

In a message dated 10/14/2006 7:55:45 A.M. Central Standard Time,

aknippa@... writes:

YOUR SISTER IS DEPRESSED THAT COMES FROM THE STEROIDS, THEY DO

WEIRD THINGS TO YOU. I WAS VERY DEPRESSED, ITS HARD TO COME TO TERMS

THAT YOU HAVE A LIFE THREATENING DISEASE AND YOUR NEVER GOING TO BE

THE SAME. BUT YOU GET OVER IT. MY DOC GRADUALLY TAPERED ME OFF

STEROIDS WHEN MY LIVER LEVELS WERE NORMAL. YOU REALLY DON'T FEEL

NORMAL TIL YOUR OFF THEM. I SUFFERED MEMORY LOSS ONLY TEMOPORARY. I

WAS SCATTERED BRAIN, SLEEPLESSNESS. I DIDN'T GAIN WEIGHT BUT MY FACE

WOULD GET PUFFY. I REALLY DIETED NOT TO GAIN. DOCS THOUGHT I HAD HEP

C BUT MY COUNTS WOULDN'T GO DOWN AND THEY WERE VERY HIGH AND I WAS

IN LIVER FAILURE, WHEN THEY FINALLY DISCOVERED I HAD AUTOIMMUNE

HEPATITIS. YOUR SISTER NEED LOTS OF SUPPORT ITS A RARE DISEASE TO

HAVE. NO ONE REALLY UNDERSTANDS UNLESS YOU HAVE IT. THE OTHER DRUG

SHE TAKES IS TO KEEP HER IMMUNE SYSTEM DOWN , I TAKE MERCAPTOPURINE

OR BETTER KNOWN AS 6MP. THIS CAUSES FATIGUE I HAVE TO TAKE A NAP

EVERYDAY . SOMETIMES I CANT CLEAN OR COOK OR ANYTHING I NEED HELP.

THATS WHEN FAMILY COMES IN. PEOPLE DON'T UNDERSTAND, BECAUSE YOU

DON'T LOOK SICK .ANOTHER GREAT PLACE TO GET INFO IS AT

AUTOIMMUNEHEPATITS.CO.UK/AIHFORUM.HTM I LEARNED ALOT FROM THIS

SITE,AND PEOPLE REALLY UNDERSTAND, MY NAME ON THAT WEBSITE IS

ALLEYCAT. I WAS DIAGNOSED IN JAN OF THIS YEAR.I ONLY JOINED RECENTLY

I JUST READ THE POSTS NOW I PARTICIPATE. I FEEL FOR YOUR SISTER ITS

NICE SHE HAS YOU. ON SMOKING THE REASON BESIDES OBVIOUS IS THAT THE

CHEMO DRUG KEEP YOUR IMMUNE SYSTEM DOWN AND SO DOES SMOKING SO YOU

ARE VUNERABL

[Guest guest]

Your sister's illness has most likely progressed since her dianosis in '98 and

condition

has changed. Having less energy is enough to depress anyone. The drugs will

alter moods sometimes, too. Life slows down; maybe from giving up a job, or

realizing that you can't do as much housework in a day as you used to be able

to. You don't want to dwell on how bad you really feel. Or have a relative watch

you with ''that look' "

I enjoy visits with my sisters where we just have a little " potluck " & maybe

watch a ballgame or a movie. We laugh & have fun. But don't talk about being

sick. My mother

isn't good at this-she watches me & analyzes things (she's already had this

disease).

Try little visits & make them fun. And read about the two dieases & try to

gain some

insight into what your sister is going through.

Good luck

mjmacyellow <mmacneil12@...> wrote:

My sister has autoimmune liver disease and I am trying to find more

information to understand it. Is there a difference between

autoimmune liver disease and autoimmune hepatitis?

She was diagnosed in '98 originally with hep c

now she says it autoimmune liver disease

she's been fine until this summer and is currently taking a low dose

of prednisone and a chemo drug

she seems very depressed and we all feel helpless. she does not pick

up or return most of her calls yet then emails her friends and family

that she is so alone and no one calls or visits her

i'm thinking the medication may have something to do with this

depression but we are at a loss of what support we can give. she

seems to feel her situation is absolutely hopeless and has made

funeral arrangements yet tells me the specialist says she can live a

productive life for years with medication.

we are also concerned that she is not doing her part in managing her

illness in that she still smokes and doesn't try to get any exercise.

I need advice in how best to deal with this. I want to help but

don't want to be held hostage to someone's possibly skewed view of

her situation. I'd like to do something meaningful and proactive for

her and don't want to get caught up in an endless pity party. This

is my first step, to try to understand what she is going through

[Guest guest]

> Thanks for you reply Alley. I'm familiar with prednisone as my daughter was

on it for years for asthma. Why does the

drup keep your immune system down - doesn't that leave you vulnerable to other

things. I don't understand the purpose

of that. Would a doctor prescribe something for the depression or would that be

too hard on the liver.

Thanks again, and good luck to you

>

>

> > >

> YOUR SISTER IS DEPRESSED THAT COMES FROM THE STEROIDS, THEY DO

> WEIRD THINGS TO YOU. I WAS VERY DEPRESSED, ITS HARD TO COME TO TERMS

> THAT YOU HAVE A LIFE THREATENING DISEASE AND YOUR NEVER GOING TO BE

> THE SAME. BUT YOU GET OVER IT. MY DOC GRADUALLY TAPERED ME OFF

> STEROIDS WHEN MY LIVER LEVELS WERE NORMAL. YOU REALLY DON'T FEEL

> NORMAL TIL YOUR OFF THEM. I SUFFERED MEMORY LOSS ONLY TEMOPORARY. I

> WAS SCATTERED BRAIN, SLEEPLESSNESS. I DIDN'T GAIN WEIGHT BUT MY FACE

> WOULD GET PUFFY. I REALLY DIETED NOT TO GAIN. DOCS THOUGHT I HAD HEP

> C BUT MY COUNTS WOULDN'T GO DOWN AND THEY WERE VERY HIGH AND I WAS

> IN LIVER FAILURE, WHEN THEY FINALLY DISCOVERED I HAD AUTOIMMUNE

> HEPATITIS. YOUR SISTER NEED LOTS OF SUPPORT ITS A RARE DISEASE TO

> HAVE. NO ONE REALLY UNDERSTANDS UNLESS YOU HAVE IT. THE OTHER DRUG

> SHE TAKES IS TO KEEP HER IMMUNE SYSTEM DOWN , I TAKE MERCAPTOPURINE

> OR BETTER KNOWN AS 6MP. THIS CAUSES FATIGUE I HAVE TO TAKE A NAP

> EVERYDAY . SOMETIMES I CANT CLEAN OR COOK OR ANYTHING I NEED HELP.

> THATS WHEN FAMILY COMES IN. PEOPLE DON'T UNDERSTAND, BECAUSE YOU

> DON'T LOOK SICK .ANOTHER GREAT PLACE TO GET INFO IS AT

> AUTOIMMUNEHEPATITS.CO.UK/AIHFORUM.HTM I LEARNED ALOT FROM THIS

> SITE,AND PEOPLE REALLY UNDERSTAND, MY NAME ON THAT WEBSITE IS

> ALLEYCAT. I WAS DIAGNOSED IN JAN OF THIS YEAR.I ONLY JOINED RECENTLY

> I JUST READ THE POSTS NOW I PARTICIPATE. I FEEL FOR YOUR SISTER ITS

> NICE SHE HAS YOU. ON SMOKING THE REASON BESIDES OBVIOUS IS THAT THE

> CHEMO DRUG KEEP YOUR IMMUNE SYSTEM DOWN AND SO DOES SMOKING SO YOU

> ARE VUNERABLE TO DISEASES. I HOPED I HELPED ALITTLE. I HOPE SHE

> DOING BETTER MY HEART GOES TO HER.

>

>

>

>

[Guest guest]

> Thanks for your response. When you say your mother has already had the

disease does that mean she's recovered? I was

under the impression that it will be a life long illness for my sister.

>

> Your sister's illness has most likely progressed since her dianosis in '98 and

condition

> has changed. Having less energy is enough to depress anyone. The drugs will

alter moods sometimes, too. Life slows

> down; maybe from giving up a job, or realizing that you can't do as much

housework in a day as you used to be able to.

> You don't want to dwell on how bad you really feel. Or have a relative watch

you with ''that look' "

> I enjoy visits with my sisters where we just have a little " potluck " & maybe

watch a ballgame or a movie. We laugh &

> have fun. But don't talk about being sick. My mother

> isn't good at this-she watches me & analyzes things (she's already had this

disease).

> Try little visits & make them fun. And read about the two dieases & try to

gain some

> insight into what your sister is going through.

> Good luck

>

> mjmacyellow <mmacneil12@...> wrote:

> My sister has autoimmune liver disease and I am trying to find more

> information to understand it. Is there a difference between

> autoimmune liver disease and autoimmune hepatitis?

> She was diagnosed in '98 originally with hep c

> now she says it autoimmune liver disease

> she's been fine until this summer and is currently taking a low dose

> of prednisone and a chemo drug

> she seems very depressed and we all feel helpless. she does not pick

> up or return most of her calls yet then emails her friends and family

> that she is so alone and no one calls or visits her

> i'm thinking the medication may have something to do with this

> depression but we are at a loss of what support we can give. she

> seems to feel her situation is absolutely hopeless and has made

> funeral arrangements yet tells me the specialist says she can live a

> productive life for years with medication.

> we are also concerned that she is not doing her part in managing her

> illness in that she still smokes and doesn't try to get any exercise.

> I need advice in how best to deal with this. I want to help but

> don't want to be held hostage to someone's possibly skewed view of

> her situation. I'd like to do something meaningful and proactive for

> her and don't want to get caught up in an endless pity party. This

> is my first step, to try to understand what she is going through

>

>

>

>

>

>

>

[Guest guest]

Hi,

autoimmune hepatitis patients have to use immunosuppressive

medication which is mainly used for transplant patients in

order to stop the body from rejecting the transplant. That's

because in autoimmune hepatitis the body is actually attacking

and rejecting it's own tissue, in this case the liver, as if

it was a transplant. Thus the name " autoimmune " .

And yes, you are right, it does leave us vulnerable for all

sorts of other things, but unfortunately there isn't much

choice. We just have to be extra careful and try to avoid

sources of infections, vaccinations containing live viruses,

and so on.

Some people do take anti-depressants for the steroid

depression, but apparently it can be an added risk on the

liver. In my case, when I was first diagnosed, I had been on

Seroxat/Paxil (a serotonin reuptake inhibitor, SSRI) for a

while and I was immediately taken off it. The doctors said

that while it wasn't the cause, the fact that it might have

been some sort of final straw and a triggering factor cannot

be ruled out altogether, and therefore better safe than sorry.

There is a new type of anti-depressant which work pretty much

in the same way as the SSRIs, but don't affect the liver as

they are removed from the system through the kidneys. They

contain milnacipran, which is a serotonin and noradrenaline

reuptake inhibitor that should be even more efficient than the

SSRI drugs (neither one worked for me, though). They do have

side effects also, and some people have had real problems

trying to get off them (I didn't have any), but you might want

to consider them. They have helped many people and might help

your sister.

Usually AIH is a life long illness and the patients have to be

on some sort of medication for the rest of their lives. Most,

however, are able to lead a pretty normal life once the

initial shock is over. There are limitations and some days are

worse than others, but I think your sister will eventually get

over it and start feeling better. If she is very depressed

then I think she should get some help for that, as a depressed

person is not always able to function normally or think

reasonably (been there...). The hard part might be persuading

her to see a psychiatrist, which would be best under the

circumstances, although even a GP can usually prescribe

anti-depressants.

Wishing all the best for you and your sister,

Jaana

mmacneil12@... wrote:

>

>

> > Thanks for you reply Alley. I'm familiar with prednisone as my

> daughter was on it for years for asthma. Why does the

> drup keep your immune system down - doesn't that leave you vulnerable to

> other things. I don't understand the purpose

> of that. Would a doctor prescribe something for the depression or would

> that be too hard on the liver.

> Thanks again, and good luck to you

--

Jaana Fogl

jfogl at saunalahti.fi

*************************************

* I am a Bear of Very Little Brain, *

* and long words Bother me. *

* - Winnie the Pooh *

*************************************

[Guest guest]

My mother had ( & I now have PBC). My mother was transplanted 10 yrs.ago. She

still

has the antibodies in her system that will fight the new liver but this takes

many yrs. to happen again. Since she's now 71 yrs. old, the odds are that

something else will

hhappen before the liver is damaged to that point again.

mmacneil12@... wrote:

> Thanks for your response. When you say your mother has already had

the disease does that mean she's recovered? I was

under the impression that it will be a life long illness for my sister.

>

> Your sister's illness has most likely progressed since her dianosis in '98 and

condition

> has changed. Having less energy is enough to depress anyone. The drugs will

alter moods sometimes, too. Life slows

> down; maybe from giving up a job, or realizing that you can't do as much

housework in a day as you used to be able to.

> You don't want to dwell on how bad you really feel. Or have a relative watch

you with ''that look' "

> I enjoy visits with my sisters where we just have a little " potluck " & maybe

watch a ballgame or a movie. We laugh &

> have fun. But don't talk about being sick. My mother

> isn't good at this-she watches me & analyzes things (she's already had this

disease).

> Try little visits & make them fun. And read about the two dieases & try to

gain some

> insight into what your sister is going through.

> Good luck

>

> mjmacyellow <mmacneil12@...> wrote:

> My sister has autoimmune liver disease and I am trying to find more

> information to understand it. Is there a difference between

> autoimmune liver disease and autoimmune hepatitis?

> She was diagnosed in '98 originally with hep c

> now she says it autoimmune liver disease

> she's been fine until this summer and is currently taking a low dose

> of prednisone and a chemo drug

> she seems very depressed and we all feel helpless. she does not pick

> up or return most of her calls yet then emails her friends and family

> that she is so alone and no one calls or visits her

> i'm thinking the medication may have something to do with this

> depression but we are at a loss of what support we can give. she

> seems to feel her situation is absolutely hopeless and has made

> funeral arrangements yet tells me the specialist says she can live a

> productive life for years with medication.

> we are also concerned that she is not doing her part in managing her

> illness in that she still smokes and doesn't try to get any exercise.

> I need advice in how best to deal with this. I want to help but

> don't want to be held hostage to someone's possibly skewed view of

> her situation. I'd like to do something meaningful and proactive for

> her and don't want to get caught up in an endless pity party. This

> is my first step, to try to understand what she is going through

>

>

>

>

>

>

>

[Guest guest]

> Hi - your email gave me a wealth of information. Thank you so much.

>

> Hi,

>

> autoimmune hepatitis patients have to use immunosuppressive

> medication which is mainly used for transplant patients in

> order to stop the body from rejecting the transplant. That's

> because in autoimmune hepatitis the body is actually attacking

> and rejecting it's own tissue, in this case the liver, as if

> it was a transplant. Thus the name " autoimmune " .

> And yes, you are right, it does leave us vulnerable for all

> sorts of other things, but unfortunately there isn't much

> choice. We just have to be extra careful and try to avoid

> sources of infections, vaccinations containing live viruses,

> and so on.

>

> Some people do take anti-depressants for the steroid

> depression, but apparently it can be an added risk on the

> liver. In my case, when I was first diagnosed, I had been on

> Seroxat/Paxil (a serotonin reuptake inhibitor, SSRI) for a

> while and I was immediately taken off it. The doctors said

> that while it wasn't the cause, the fact that it might have

> been some sort of final straw and a triggering factor cannot

> be ruled out altogether, and therefore better safe than sorry.

> There is a new type of anti-depressant which work pretty much

> in the same way as the SSRIs, but don't affect the liver as

> they are removed from the system through the kidneys. They

> contain milnacipran, which is a serotonin and noradrenaline

> reuptake inhibitor that should be even more efficient than the

> SSRI drugs (neither one worked for me, though). They do have

> side effects also, and some people have had real problems

> trying to get off them (I didn't have any), but you might want

> to consider them. They have helped many people and might help

> your sister.

>

> Usually AIH is a life long illness and the patients have to be

> on some sort of medication for the rest of their lives. Most,

> however, are able to lead a pretty normal life once the

> initial shock is over. There are limitations and some days are

> worse than others, but I think your sister will eventually get

> over it and start feeling better. If she is very depressed

> then I think she should get some help for that, as a depressed

> person is not always able to function normally or think

> reasonably (been there...). The hard part might be persuading

> her to see a psychiatrist, which would be best under the

> circumstances, although even a GP can usually prescribe

> anti-depressants.

>

> Wishing all the best for you and your sister,

> Jaana

>

> mmacneil12@... wrote:

> >

> >

> > > Thanks for you reply Alley. I'm familiar with prednisone as my

> > daughter was on it for years for asthma. Why does the

> > drup keep your immune system down - doesn't that leave you vulnerable to

> > other things. I don't understand the purpose

> > of that. Would a doctor prescribe something for the depression or would

> > that be too hard on the liver.

> > Thanks again, and good luck to you

>

> --

> Jaana Fogl

> jfogl at saunalahti.fi

>

> *************************************

> * I am a Bear of Very Little Brain, *

> * and long words Bother me. *

> * - Winnie the Pooh *

> *************************************

>

>