Re: sadly back on all the meds :(

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Elena Pheasant

_________________________________________________________

May 12, 1999

Me again!

I just wanted to say that I am sorry about your present situation. I

cant imagine what your feeling. Im presently on Paxil and Serzone.

Paxil is a very good drug and im sure it will help you emotionally. I

was actually worried that I was doing more harm to my liver by taking

those drugs. But it seems that its not the case?

All our thoughts are with you and your family. I am wishing that after

taking the drugs again you will get alot better.

Take care of yourself

Elena

--- TammyAnnG@... wrote:

> From: TammyAnnG@...

>

> I wanted to let you know that I went to my

> hepatologist yesterday and sadly I

> am out of any " remission " that I thought I may be

> in.....my labs are in the

> 200 and 400 ranges......my gamma is 2.2.......he has

> made arrangements to

> restart me on Prednison/Imuran .....keep me on

> actigal and start me on some

> type of anti depressant like Paxil in the hopes it

> will combat some of the

> horrible " prednisone psychosis " I get......I feel

> badly that I have to do

> this but I guess I knew it was inevidable......I

> quit my job yesterday so I

> won't have the stress of trying to " function "

> without screwing things

> up......I have trouble even computing simple math on

> the drugs......I have

> terouble driving on the meds.......he also told me

> he feels a liver tx is

> inevidable as well.......sad day in my

> house.....Tammy/AIH/NY

>

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_________________________________________________________

May 12, 1999

Thank you , Id really appreciate that.

Elena

--- " .Hutchinson " <brandy.hutchinson@...> wrote:

> From: " .Hutchinson "

> <brandy.hutchinson@...>

>

> Elenna

>

> I'm gonna ask my doctor that, I know that some of my

> tests were normal,

> at diagnoses that's why it took so long for a

> diagnoses, and through out

> the years, some test have risen and others stayed

> normal (which was not

> normal) he was gonna change the diagnoses recently

> and tried thought it

> could be something else, but he tested for others

> and he sticking with

> aih for now?? I'll have him clarify that next

> appointment for you, I'll

> take ur email!!

>

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Elena Pheasant

_________________________________________________________

May 12, 1999

Hi Tammy,

I've been taking paxil 40mg/day, for about 2 years. It has made a huge

difference in my moods. I lost my job about 20 months ago, it was difficult,

but I too, knew it was inevitable. Hang in there, it will get better.

Don

May 12, 1999

Elenna

I'm gonna ask my doctor that, I know that some of my tests were normal,

at diagnoses that's why it took so long for a diagnoses, and through out

the years, some test have risen and others stayed normal (which was not

normal) he was gonna change the diagnoses recently and tried thought it

could be something else, but he tested for others and he sticking with

aih for now?? I'll have him clarify that next appointment for you, I'll

take ur email!!

May 12, 1999

Tammy,

I am saddened with you. I was hopeful that things would go well and you could

stay off the meds. At least you know you can take them. Will keep you in my

thoughts and prayers

Tami (AIH) chollyfam@...

May 12, 1999

TammyAnn:

Sorry to hear that you are sick again. I have that in the back of my mind

everytime I try to get off the Prednisone. I hoping that the new medicine

will help but I have been soooooo tired and crabby.

Today I slept for two hours and yesterday it was three hours. My naps are

not getting short but longer.

Hang In There We Are Here For You!!!!

Sue AIH

Wisconsin

May 12, 1999

Don:

Did you lose your job because of your health? I just wondering due to the

status at work right now.

Sue AIH

Wisconsin

May 13, 1999

Tammy,

I'm so sorry to hear about the bad news. How long were you in remission?

How long were you off the meds? I was told that despite remission my

doctors don't intend to take me off Imuran (50 mgs. from the beginning) and

if my labs begin to rise, they'll first try to stop the process by

increasing the Imuran. If that doesn't work, I suppose it means back to

Prednisone. But, each liver disease center seems to have their own program

and they don't all follow the same protocol.

Why are you taking Actigal? Do you also have some bile duct problems? I

asked my doctor about it and he said I don't need it. I never did have

" prednisone psychosis " , or maybe I did and everyone but me noticed it. I

was very irritable but that made sense, since I felt lousy. Actually, pred

acted almost like a stimulant for me when I went back on it last February

(after only one month off of it). I was so upbeat you'd have thought I'd

won the lottery. I think that it was because of the relief from all that

joint and muscle pain and the loss of weight. I did have some trouble

concentrating when I was driving around town but seemed to focus okay on

the highway. Good thing, because I tend to push the speed limits.

Was this your first remission? Sorry, I don't remember but I think you've

told us all of that before. Does your doctor think that a transplant is

inevitable because a relapse means that the progression of liver

deterioration can't be controlled? Naturally, this is very interesting to

me since I'm also in remission. Do you ever have liver pain? I never have

until recently, when I feel just a slight pain now and then on my right

side, where I think my liver is. But, if I'm in remission, nothing should

be hurting. Who knows, anyhow. I get so weary being anxious about these

things. And, don't we all?

I do hope that you go into remission again and soon. I'll be thinking and

worrying about you.

Take care,

Geri

May 13, 1999

Tammy, so sorry to hear your news. I feel for you and how disappointed you

must be. But I think on the bright side, you quitting your job can only be a

positive change for you and your healing. I hope that transition goes well.

How long were you off of meds and in remission?

A hug to you, Roxanne

May 13, 1999

Geri

Isnt that strange? I have mild AIH and I have liver pain and is also

tender especially when pressing on it. I would have thought it would

hurt only if you had a more severe case of AIH

Elena

--- Geri Spang <spangs@...> wrote:

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

>

> Tammy,

> I'm so sorry to hear about the bad news. How long

> were you in remission?

> How long were you off the meds? I was told that

> despite remission my

> doctors don't intend to take me off Imuran (50 mgs.

> from the beginning) and

> if my labs begin to rise, they'll first try to stop

> the process by

> increasing the Imuran. If that doesn't work, I

> suppose it means back to

> Prednisone. But, each liver disease center seems to

> have their own program

> and they don't all follow the same protocol.

>

> Why are you taking Actigal? Do you also have some

> bile duct problems? I

> asked my doctor about it and he said I don't need

> it. I never did have

> " prednisone psychosis " , or maybe I did and everyone

> but me noticed it. I

> was very irritable but that made sense, since I felt

> lousy. Actually, pred

> acted almost like a stimulant for me when I went

> back on it last February

> (after only one month off of it). I was so upbeat

> you'd have thought I'd

> won the lottery. I think that it was because of the

> relief from all that

> joint and muscle pain and the loss of weight. I did

> have some trouble

> concentrating when I was driving around town but

> seemed to focus okay on

> the highway. Good thing, because I tend to push the

> speed limits.

>

> Was this your first remission? Sorry, I don't

> remember but I think you've

> told us all of that before. Does your doctor think

> that a transplant is

> inevitable because a relapse means that the

> progression of liver

> deterioration can't be controlled? Naturally, this

> is very interesting to

> me since I'm also in remission. Do you ever have

> liver pain? I never have

> until recently, when I feel just a slight pain now

> and then on my right

> side, where I think my liver is. But, if I'm in

> remission, nothing should

> be hurting. Who knows, anyhow. I get so weary

> being anxious about these

> things. And, don't we all?

>

> I do hope that you go into remission again and soon.

> I'll be thinking and

> worrying about you.

>

> Take care,

> Geri

>

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Elena Pheasant

_________________________________________________________

May 13, 1999

Elena,

The tenderness is not connected with the amount of damage necessarily. It

makes sense that it is more connected with the amount of inflammation. Is

your inflammation high?

Roxanne

May 13, 1999

No, my inflammation is supposed to be mild. Thats why I dont understand

the pain and tenderness of my liver

Elena

--- CREE8V1@... wrote:

> From: CREE8V1@...

>

> Elena,

>

> The tenderness is not connected with the amount of

> damage necessarily. It

> makes sense that it is more connected with the

> amount of inflammation. Is

> your inflammation high?

>

> Roxanne

>

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_________________________________________________________

May 14, 1999

Elena,

My doctor told me that cirrhosis actually causes the liver to shrink.

That's one of the reasons he concluded that the pain I get on my left side

isn't from the left lobe of my liver. It's my understanding that you don't

feel pain from the liver itself, but I imagine inflammation causes pain. I

had no pain on my right side even at my worst. Could it be your gall

bladder? My Mom had a badly inflamed and eventually infected gall bladder

and she was in severe pain, but they didn't identify the problem until they

did exploratory surgery. I certainly hope nothing that extreme is going on

with you and anyhow, you have good doctors and she ddn't.

Take care,

Geri

May 14, 1999

Elena,

I'm reading your messages, and they may as well be my own! I'm newly

diagnosed as well, and my biopsy showed no scarring or cirrhosis. I differ

a little in that I have severe inflammation. My liver is also pretty

tender, and I'm worried that aerobics will aggravate it. At the same time,

I want to get on a steady exercise routine before starting the pred (to

decrease the risk of weight gain). I'm struggling with the idea of putting

these medicines in my body as well. Too many differing viewpoints on the

subject. I think I'm going to really pay attention to what the liver

specialist says, and go with that. I'm hoping to bring my levels down, and

get off the meds as quickly as possible. Problem is, the herbals I'm taking

are likely lowering my levels, so they may complicate the decision. I feel

so much better taking them, though! Why can't this be easier?

>From: ELENA PHEASANT <brit71@...>

>Reply- onelist

> onelist

>Subject: Re: [ ] sadly back on all the meds

>Date: Fri, 14 May 1999 08:34:04 -0700 (PDT)

>

>From: ELENA PHEASANT <brit71@...>

>

>Tami

>Thanks for replying. At least I know im not imagining things. The pain

>feels a little worse today. The pain is mainly below my right rib cage,

>and I also have tenderness directly beneath the centre of my ribcage.

>Occasionaly, i will have a stabbing pain on my left side. Now, I know

>the liver isnt that big that it stretches to the left side. So i dont

>know what all this pain means, I know its not inside my head.

>Take care

>Elena

>

>--- Chollyfam@... wrote:

> > From: Chollyfam@...

> >

> > Elena,

> >

> > I, too, had a milder case of AIH, no cirrhosis, yet.

> > I guess that isn't

> > milder, just that they caught it earlier. But I did

> > also experience

> > tenderness in my upper right area. My liver was

> > tender when prodded by the

> > doctor at the examinations. Seems funny that we

> > have the pain and our liver

> > has less damage. Maybe it is our liver's signal

> > that something is wrong and

> > we better pay attention!

> >

> > Tami (AIH) chollyfam@...

> >

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>

>_________________________________________________________

>

May 14, 1999

Elena,

I, too, had a milder case of AIH, no cirrhosis, yet. I guess that isn't

milder, just that they caught it earlier. But I did also experience

tenderness in my upper right area. My liver was tender when prodded by the

doctor at the examinations. Seems funny that we have the pain and our liver

has less damage. Maybe it is our liver's signal that something is wrong and

we better pay attention!

Tami (AIH) chollyfam@...

May 14, 1999

Geri

Thats interesting, i was thinking that it cant be from my liver as

there is only mild inflamation. In regards to my gallbladder, I had an

ultrasound and it didnt show any stones or anything;however, they

spotted sludge in my gallbladder. I dont know what that means, does

anyone know? Could it be anything to do with AIH. Also, my liver is

tender to the toach. When i prode it or when a doctor prodes it, its a

little painful. Has anyone with AIH experience that?

Thanks for your response,Informative as always.

Take care

Elena

--- Geri Spang <spangs@...> wrote:

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

>

> Elena,

> My doctor told me that cirrhosis actually causes the

> liver to shrink.

> That's one of the reasons he concluded that the pain

> I get on my left side

> isn't from the left lobe of my liver. It's my

> understanding that you don't

> feel pain from the liver itself, but I imagine

> inflammation causes pain. I

> had no pain on my right side even at my worst.

> Could it be your gall

> bladder? My Mom had a badly inflamed and eventually

> infected gall bladder

> and she was in severe pain, but they didn't identify

> the problem until they

> did exploratory surgery. I certainly hope nothing

> that extreme is going on

> with you and anyhow, you have good doctors and she

> ddn't.

> Take care,

> Geri

>

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_________________________________________________________

May 14, 1999

Tami

Thanks for replying. At least I know im not imagining things. The pain

feels a little worse today. The pain is mainly below my right rib cage,

and I also have tenderness directly beneath the centre of my ribcage.

Occasionaly, i will have a stabbing pain on my left side. Now, I know

the liver isnt that big that it stretches to the left side. So i dont

know what all this pain means, I know its not inside my head.

Take care

Elena

--- Chollyfam@... wrote:

> From: Chollyfam@...

>

> Elena,

>

> I, too, had a milder case of AIH, no cirrhosis, yet.

> I guess that isn't

> milder, just that they caught it earlier. But I did

> also experience

> tenderness in my upper right area. My liver was

> tender when prodded by the

> doctor at the examinations. Seems funny that we

> have the pain and our liver

> has less damage. Maybe it is our liver's signal

> that something is wrong and

> we better pay attention!

>

> Tami (AIH) chollyfam@...

>

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_________________________________________________________

May 14, 1999

Elena,

As for my experience---I also had a lot of tenderness on my upper

right side and still do at times. About four months though after my

diagnosis I had gal bladder surgery. They knew it was my gal bladder

causing my pain, but couldn't figure out what was going on with it. The

last test they did had a result that it was just about to quit functioning.

The ducts were very clogged and couldn't perform properly.

As for the pain I still have it, but not nearly as bad. I had it in

the middle under my rib cage too and they even checked for a bleeding ulcer,

but nothing. So I guess we all have a few different things that accompany

our AIH. Just thought I would share this with you. Hope all gets better

for you.

Dorothy

> Re: [ ] sadly back on all the meds

>

> From: ELENA PHEASANT <brit71@...>

>

> Geri

> Thats interesting, i was thinking that it cant be from my liver as

> there is only mild inflamation. In regards to my gallbladder, I had an

> ultrasound and it didnt show any stones or anything;however, they

> spotted sludge in my gallbladder. I dont know what that means, does

> anyone know? Could it be anything to do with AIH. Also, my liver is

> tender to the toach. When i prode it or when a doctor prodes it, its a

> little painful. Has anyone with AIH experience that?

> Thanks for your response,Informative as always.

> Take care

> Elena

>

May 14, 1999

ELENA PHEASANT wrote:

>

> In regards to my gallbladder, I had an

> ultrasound and it didnt show any stones or anything;however, they

> spotted sludge in my gallbladder. I dont know what that means, does

> anyone know? Could it be anything to do with AIH. Also, my liver is

> tender to the toach. When i prode it or when a doctor prodes it, its a

> little painful.

I have had every gallbladder test imaginable, no stones or anything,

except that sludge, lots of it. I dont have aih, but do have psc. My

liver is also sore to touch and you're right the drs. always manage to

find that very tender spot. I have had lots of back pains, both sides

and they say that is liver pain, that it doesn't necessarily have to be

right in the liver area. Elena, if you're dr. is the one that said

memory is no problem tell him to check again. It most definitely is

cause by the excess bile. I had no idea of that, and made jokes when I

first started losing mine, that the bile had gone to my brain. (after

seriously worried that alzheimers had set it) That is one of the first

complaints I had. And.....one of the first questions every dr. asked.

I was shocked to find my joke wasn't so funny!

Does anyone have trouble with sleeping at night? Tat is also a problem

I have. I stay awake all day but still can not sleep at night. Drs.

said that is a common symptom also, sleep reversal. And I was blaming

my husbands snoring!!!!!!

PSC

May 14, 1999

Thanks for your reply. I never heard of that. How does sludge in the

gall bladder cause memory loss? Do you think that sludge is more

associated with PSC rather than AIH? My head is so fuzzed lately. As

you see from my previous postings, I can no longer spell, my memory is

terrible and i have diffuculty getting words out. I went to a

neurologist about this and I had a MRI and EEG. He said that the eeg

was abnormal, saying the background is slow? I dont know what that

means. Anyway now hes ordered a spinal tap, which im worried about. I

wonder if what your talking about would show on the spinal tap. How did

your doctor confirm that you memory loss was due to the gall sludge?

Sorry about all the question,

Thanks for your help

Elena

--- <lparker@...> wrote:

> From: <lparker@...>

>

> ELENA PHEASANT wrote:

> >

> > In regards to my gallbladder, I had an

> > ultrasound and it didnt show any stones or

> anything;however, they

> > spotted sludge in my gallbladder. I dont know what

> that means, does

> > anyone know? Could it be anything to do with AIH.

> Also, my liver is

> > tender to the toach. When i prode it or when a

> doctor prodes it, its a

> > little painful.

>

> I have had every gallbladder test imaginable, no

> stones or anything,

> except that sludge, lots of it. I dont have aih,

> but do have psc. My

> liver is also sore to touch and you're right the

> drs. always manage to

> find that very tender spot. I have had lots of back

> pains, both sides

> and they say that is liver pain, that it doesn't

> necessarily have to be

> right in the liver area. Elena, if you're dr. is

> the one that said

> memory is no problem tell him to check again. It

> most definitely is

> cause by the excess bile. I had no idea of that,

> and made jokes when I

> first started losing mine, that the bile had gone to

> my brain. (after

> seriously worried that alzheimers had set it) That

> is one of the first

> complaints I had. And.....one of the first

> questions every dr. asked.

> I was shocked to find my joke wasn't so funny!

>

> Does anyone have trouble with sleeping at night?

> Tat is also a problem

> I have. I stay awake all day but still can not

> sleep at night. Drs.

> said that is a common symptom also, sleep reversal.

> And I was blaming

> my husbands snoring!!!!!!

>

> PSC

>

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Elena Pheasant

_________________________________________________________

May 14, 1999

Hi ,

I wonder if its PSC I have and not AIH. Your symptoms are the same as

mine! What are the diagnostic tests to determine PSC, such as blood lab

work. What was your lab results. I am interested to know.

My head is kind of funky at the moment. As you know I cant spell, my

memory is bad and I find it hards to get some words out. My EEG showed

that the background was slow, I dont know what that means,but my

neurologist is giving me a spinal tap. Do you know if a spinal tap

would show PSC/bile etc. How does the bile affect the memory and how

did your doctor diagnos the cause of your memory loss and your psc

Sorry about all the questions, its just your case seems so similar to

mine

Thanks for your reply

Elena

--- <lparker@...> wrote:

> From: <lparker@...>

>

> ELENA PHEASANT wrote:

> >

> > In regards to my gallbladder, I had an

> > ultrasound and it didnt show any stones or

> anything;however, they

> > spotted sludge in my gallbladder. I dont know what

> that means, does

> > anyone know? Could it be anything to do with AIH.

> Also, my liver is

> > tender to the toach. When i prode it or when a

> doctor prodes it, its a

> > little painful.

>

> I have had every gallbladder test imaginable, no

> stones or anything,

> except that sludge, lots of it. I dont have aih,

> but do have psc. My

> liver is also sore to touch and you're right the

> drs. always manage to

> find that very tender spot. I have had lots of back

> pains, both sides

> and they say that is liver pain, that it doesn't

> necessarily have to be

> right in the liver area. Elena, if you're dr. is

> the one that said

> memory is no problem tell him to check again. It

> most definitely is

> cause by the excess bile. I had no idea of that,

> and made jokes when I

> first started losing mine, that the bile had gone to

> my brain. (after

> seriously worried that alzheimers had set it) That

> is one of the first

> complaints I had. And.....one of the first

> questions every dr. asked.

> I was shocked to find my joke wasn't so funny!

>

> Does anyone have trouble with sleeping at night?

> Tat is also a problem

> I have. I stay awake all day but still can not

> sleep at night. Drs.

> said that is a common symptom also, sleep reversal.

> And I was blaming

> my husbands snoring!!!!!!

>

> PSC

>

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