Update

[Guest guest]

I can really relate to the time it takes for a Dr. to come up with a

dianosis. I started with high liver levels the Dr.

though it was Hep-c for 1 1/2 years where he treated me with interferon

(which brings on constant flu like symptoms) after three months of that i

told the dr. that i'd rather die, he took me off of it. The next time i went

to see him i found out the dr. died, anyway i started with another dr. and

it took him another 1 1/2 years to come up with psc and crohns. The biopsies

were inconclusive, the ercp was how they finally got it.

Of course in the begining they didn't have actigall and they gave me

colchacine what a joke( it's for gout). The next gasterinterolgist i saw

told me it took him over 10 years to

diagnois one guy with Psc. Currently i see a hepatologist but he has no real

advise or prophecies. Despite the Dr.s my levels are down by a third. mike

On Tue, 25 May 1999 20:22:51 -0400, Barbara Forshee wrote:

> First I want to thank everyone for their responses concerning my request

=

> for information about having a liver biopsy. =20

>

> My son had the biopsy last week and came through with no pain =

> whatsoever. We were very thankful for that. I heard from his gastro =

> doc (my son also has Crohn's disease) today and they are saying that is =

> looks as if he has chronic persistent hepatitis. He said he will send =

> the biopsy out for a second opinion which would take a month or two to =

> get. He also said that sometimes CPH is the precursor of AIH. I was =

> wondering if any of you with AIH ever received this type of diagnosis. =

> The doc seems to think that if the diagnosis of CPH is correct, we would

=

> not treat but would do routine blood work and annual liver biopsies to =

> keep tabs on things and watch for any changes that might occur.

>

> Any input concerning this would be greatly appreciated!!

>

> Thanks to all.

>

> Barb-FL

_______________________________________________________

Get your free, private email at http://mail.excite.com/

[Guest guest]

Barb,

I was first diagnosed with Chronic Active Hepatitis, Four months later it

was NASH and then AIH. Best of luck to you and your son!

Tami (AIH)

chollyfam@...

[Guest guest]

Tami

How did they finally decide on AIH. They think I have a combo of NASH and

AIH. Just curious-was it the biopsy? Labs?

Thanks

Susie

[Guest guest]

FYI:

Cronic Active Hepatitis was the name of AIH first. They changed it along the

line.

[Guest guest]

Barb Forshee-FL

For your son, I would cut back on or eliminate anything that is bad for the

liver just to baby it. Many AIH patients like my wife were told that the blood

tests showed something mildly wrong but couldn't say what yet. Years later they

were diagnosed with AIH. Blood tests alone can diagnose AIH by an elimination

process, I don't see why he needs to have a liver biopsy every year. But I'm not

a doctor and I haven't followed your case on this site. Could get a second

opinion from a top notch hepatologist? Might need more extensive blood tests

(lots of vials) , but nothing more invasive or uncomfortable than that.

What do you other liver patients think? (Careful Barb, sometimes we only trade

ignorance.)

[ ] Update

First I want to thank everyone for their responses concerning my request for

information about having a liver biopsy.

My son had the biopsy last week and came through with no pain whatsoever. We

were very thankful for that. I heard from his gastro doc (my son also has

Crohn's disease) today and they are saying that is looks as if he has chronic

persistent hepatitis. He said he will send the biopsy out for a second opinion

which would take a month or two to get. He also said that sometimes CPH is the

precursor of AIH. I was wondering if any of you with AIH ever received this

type of diagnosis. The doc seems to think that if the diagnosis of CPH is

correct, we would not treat but would do routine blood work and annual liver

biopsies to keep tabs on things and watch for any changes that might occur.

Any input concerning this would be greatly appreciated!!

Thanks to all.

Barb-FL

[Guest guest]

Barb,

A lot of gastroenterologists are slow in getting up to speed on what is

going on. A lot of us were slow in getting diagnosed with AIH. In the

medical books not too long ago, the only liver diseases they had classified

were type A, type B and " non A non B " in which they lumped everything else.

Then they discovered type C and that opened the door to realizing there were

even other types. (eg. copper and iron) A lot of them were even slow on

learning about type C. AIH used to be called by many other names such as

chronic ideopathic active hepatitus. (Ideopathic is fancy doctor talk for "

we don't know " (from the word idiot). I was really angry with the Boston

doctor that failed to diagnose my wife 6 years ago. He did nuclear injection

ct scans, etc but could have concluded it was AIH by simple but extensive

blood tests if he had known better. It is a test of exclusion. If it is not

all these other things then it is AIH. But you have to test for all the

other things before you can say this. That is why I said it takes lots of

vials to fill with blood. And this was a large Boston Hospital! We were

finally correctly diagnosed by the Research Director of pancrobiliary

research at Beth Israel Hospital in Boston. (Dr. D. Freedman. (617)

667 5576. Our normal internist took limited blood tests and didn't have a

clue so sent us to him. Have your doctor call him and show him my nasty

note. I get worked up about this! The sooner you can acurately diagnose

this, the more chance you may have to treat it so possibly it goes into

remission.

Where do you live in Florida? We used to live in West Palm and we found it

pretty backward medically speaking. The name your doctor gave you for your

son's problem is no name at all. The fact that they have to send out your

son's liver biopsy for analysis and it will take a month to get the results

really turns me off.

Re: [ ] Update

> From: Chollyfam@...

>

> Barb,

>

> I was first diagnosed with Chronic Active Hepatitis, Four months later it

> was NASH and then AIH. Best of luck to you and your son!

>

> Tami (AIH)

> chollyfam@...

>

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

> It's finally here! What's your opinion?

>

> Create a Star Wars discussion group at ONElist.

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

> Please support the American Liver Foundation!

>

> 1.) To subscribe send e-mail to -subscribeonelist

> 2.) To UNsubscribe send to -unsubscribeonelist

> 3.) Digest e-mail format send to -digestonelist

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>

[Guest guest]

Yes, i had several biopsy which were inconlusive too. I've only had one ercp

and the Dr. acted like it was no big deal, but when i got to the hospital

they handed me a leaflet which said that people have died from the procedure

and the Dr. said that depending on what he found they may do some other

" tricks " while they are in there. I had some problems after mine, after i

was awakened they took me to a room, then after a while they had me take

liquids progressing to soup and jello. Anyway, a few hours later, as i

walked out of the hospital i lost everything i ate in the shrubs in front of

the hospital. I was sick and pretty sore and was more than a little put out

with the dr. as he didn't warn me about these problem, which he later said

were normal. bob

On Wed, 26 May 1999 13:34:42 -0400, Barbara Forshee wrote:

> Mike,

>

> You mentioned that you had had an ERCP done and that was the how they =

> finally came up with your diagnosis. My son's doc mentioned that if the

=

> liver biopsy wasn't specific or ruled out AIH that the ERCP would be the

=

> next test we would do to see if he had PSC. You also mentioned that you

=

> had Crohn's disease which is a problem for us also and I guess PSC and =

> AIH seem to often go hand in hand with Crohn's disease. If you don't =

> mind, you you kind of fill me in on your experience with an ERCP just in

=

> case that is our next step. It sounds awful, but the biopsy did also =

> and we did fine. Thanks for your help.

>

> Barb/FL

_______________________________________________________

Get your free, private email at http://mail.excite.com/

[Guest guest]

Barb,

I'm happy to hear that the biopsy was an uneventful process - for both of you.

I'll bet you were surprised at how quickly it was over. It sounds as though you

have a very progressive doctor. When the patient is a child, with liver

disease, the new way of thinking seems to be - to treat with as few if ANY of

these particular drugs as possible. I'm quite sure the only time your doctor

will prescribe the meds is in the event that it is absolutely necessary. And

even then he will try to eliminate them as soon as possible. I can understand

why your doctor would want another biopsy in a year, and he has probably

explained that to you.

I've been reading your posts. If you don't mind a personal observation - I think

you have a lot of common sense and a great instinct for what's best for your

son. He's lucky to have a mom like you.

My mom has Crohn's and was able to control it solely with diet for 30years. In

the last two years she's taken prednisone for a couple of weeks, here and there,

when she has a flare up (she regularly cheats).

I'd love to know the website you use for your son's diet; my mom could use a

change of pace (although, she'll probably cheat on that one too).

Wishing all of you the best,

---

Barbara Ann

AIH transplant recipient

On Tue, 25 May 1999 20:22:51 Barbara Forshee wrote:

>First I want to thank everyone for their responses concerning my request for

information about having a liver biopsy.

>

>My son had the biopsy last week and came through with no pain whatsoever. We

were very thankful for that. I heard from his gastro doc (my son also has

Crohn's disease) today and they are saying that is looks as if he has chronic

persistent hepatitis. He said he will send the biopsy out for a second opinion

which would take a month or two to get. He also said that sometimes CPH is the

precursor of AIH. I was wondering if any of you with AIH ever received this

type of diagnosis. The doc seems to think that if the diagnosis of CPH is

correct, we would not treat but would do routine blood work and annual liver

biopsies to keep tabs on things and watch for any changes that might occur.

>

>Any input concerning this would be greatly appreciated!!

>

>Thanks to all.

>

>Barb-FL

>

Get your FREE Email at http://mailcity.lycos.com

Get your PERSONALIZED START PAGE at http://my.lycos.com

[Guest guest]

Barb,

I was reading one of the posts and a some information came to me that you

might find helpful. My current doctor is Dr. Hassanein. I started seeing

him at Loma University Medical Center. He also works out of University

of California at San Diego Research Hospital. About a year ago he started me

on an intensive vitamin e therapy - I take 1600 mg a day. He explained to me

that it was because at UCSD he worked with a colleague who specialized in

pediatric hepatology and they had found tremendous results in pediatric

patients with AIH. They were able to avoid the steroids in most cases. I

will try to get more info for you the next time I am in, but your doctor

might be bale to get the studies from the hospital. Hope this helps!

Tami (AIH) chollyfam@...

[Guest guest]

Hi ,

Sorry to hear that is feeling bad again. Dieguito receives

Dexamethasone too, first when supposedly he had JRA and now because

corticoids are used in leukemia too. He didn't have problems with this,

overall because his liver is delicated too.

I hope is better again very soon

Regards,

--------------

[ ] update

From: Skis@...

's liver functions have stopped getting better as of about Saturday and

are infact getting worse now. The thought is that her immune system (JRA) is

now turning against the liver. They started her on Pulse Dexamethasone last

night and her liver functions were quite a bit worse this morning. They say

that they may have been even worse had she not had the pulse but will

obviously observe over the next couple of days and take it step by step.

They

are of course unable to treat her with any NSAIDS at this time. She had a

reaction to the Solumedrol, Prelone and Prednisone and her hands are peeling

(Palms) and she has been scratching a lot and runny nose and itching eyes

and

nose. They say this is very unusual, but it may just be that she is very

drug sensitive as she reacted in an unusual way to the Indocin too. Does

anyone reading this have any experience with IV Dexamethasone, or can tell

me

any thing about it? Any one else's child here had liver problems associated

with their JRA? How long did it last? Symptoms, etc.?

---------------------------

[Guest guest]

Hello,

When my daughter had her initial onset and they tested her liver she had

spots on her liver. They weren't sure what caused it if I remember correctly.

As far as we know she hasn't had any other problems since and she still

gets her every 6 week blood work done. What tests do they do to check

liver functions?

I hope everything goes well with . How old is she? My prayers are

with you and .

Love,

Tracey

Skis@... wrote:

> From: Skis@...

>

> 's liver functions have stopped getting better as of about Saturday and

> are infact getting worse now. The thought is that her immune system (JRA) is

> now turning against the liver. They started her on Pulse Dexamethasone last

> night and her liver functions were quite a bit worse this morning. They say

> that they may have been even worse had she not had the pulse but will

> obviously observe over the next couple of days and take it step by step. They

> are of course unable to treat her with any NSAIDS at this time. She had a

> reaction to the Solumedrol, Prelone and Prednisone and her hands are peeling

> (Palms) and she has been scratching a lot and runny nose and itching eyes and

> nose. They say this is very unusual, but it may just be that she is very

> drug sensitive as she reacted in an unusual way to the Indocin too. Does

> anyone reading this have any experience with IV Dexamethasone, or can tell me

> any thing about it? Any one else's child here had liver problems associated

> with their JRA? How long did it last? Symptoms, etc.?

>

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

[Guest guest]

Hi Tracey:

There are two liver function tests that I know about. Basically, they an check

the blood for SGPT(ALT) and SGOT(AST) tests to check the levels of the enzymes

in the liver. I hope this helps you....Good luck....

Tracey Herzog <americk@...> on 07/01/99 08:34:29 PM

Please respond to onelist

onelist

cc: (bcc: Afsi Goodarzpoor/C/Fairfax/Mobil-Notes)

Subject: Re: [ ] update

From: Tracey Herzog <americk@...>

Hello,

When my daughter had her initial onset and they tested her liver she had

spots on her liver. They weren't sure what caused it if I remember correctly.

As far as we know she hasn't had any other problems since and she still

gets her every 6 week blood work done. What tests do they do to check

liver functions?

I hope everything goes well with . How old is she? My prayers are

with you and .

Love,

Tracey

Skis@... wrote:

> From: Skis@...

>

> 's liver functions have stopped getting better as of about Saturday and

> are infact getting worse now. The thought is that her immune system (JRA) is

> now turning against the liver. They started her on Pulse Dexamethasone last

> night and her liver functions were quite a bit worse this morning. They say

> that they may have been even worse had she not had the pulse but will

> obviously observe over the next couple of days and take it step by step. They

> are of course unable to treat her with any NSAIDS at this time. She had a

> reaction to the Solumedrol, Prelone and Prednisone and her hands are peeling

> (Palms) and she has been scratching a lot and runny nose and itching eyes and

> nose. They say this is very unusual, but it may just be that she is very

> drug sensitive as she reacted in an unusual way to the Indocin too. Does

> anyone reading this have any experience with IV Dexamethasone, or can tell me

> any thing about it? Any one else's child here had liver problems associated

> with their JRA? How long did it last? Symptoms, etc.?

>

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

[Guest guest]

hello I was just thinking of Josh and hoe he was doing I am glad he is still

feeling ok I never get told s sed rate so I do not know if she has

ever been high while on pred. I know that her white cell has stayed high

,but that is it.Well good luck and I hope Josh remains fealing good .

>From: Georgina <gmckin@...>

>Reply- onelist

> < onelist>, Stilligans <Stilligansonelist>

>Subject: [ ] Update

>Date: Sat, 31 Jul 1999 22:03:06 -1000

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><< text1.html >>

[Guest guest]

's SED rate is currently 47 and that's on 10 mg decaron ree times a week

(that's about = 100mg Prednisone) then she takes 1/2mg on four days

apparently = to 5 mg Prednisone. I shall be meeting with several leading

Doctors in the field over the month of August to figure out where to go from

here. As you know things are difficult because of her liver damage. Things

are getting better with her movement all the time. She has a slight rash

about three times a week and minimal breakthrough pain now. Her temp average

about 99F- 100F but spikes on Mondays (two days on low dose does this) at

101F.

[Guest guest]

<!doctype html public " -//w3c//dtd html 4.0 transitional//en " >

<html>

Hi ,

<p>Sounds like great news, except of course for the super high dose of

steroids :-) & nbsp; I've heard that anything under 10mg, especially once

you get down to 7.5, is okay for a maintenance dose. Causing very few side

effects, much of the time, even if it is used for years and years. Another

positive sign is that 's taking the steroid every other day now, instead

of daily. I've heard that's a great way to do it and in the long term,

makes it's a bit easier to taper. Wish Josh's doctors had done that in

the beginning. They say his case was too severe to even try it, though.

If I knew then what I know now, I think I would have been more insistent

that they at least give it a try.

<p>Let's hope can start decreasing little by little ... & nbsp; soon.

I'll also be very curious about how the discussion goes when you see Dr.

Lovell. Tell him there's quite a few of us here who are interested in the

possibility of systemic kids being treated with Enbrel :-)

<p>Take care,

<br>Georgina

<p>Skis@... wrote:

<blockquote TYPE=CITE>From: Skis@...

<p>The liver doctors said they don't need to see us again as the liver

is almost

<br>back to normal. & nbsp; However now her liver can produce all the essential

proteins

<br>for an accurate SED rate it has gone up again to 74! & nbsp; She is moving

very well

<br>with no visible pain, but then again she is on the equivalent now of

90 mg

<br>Prednisone every other day so she should be! We too are looking into

Enbrel

<br>and have a meeting with DR Dan Lovell from Cincinnati on August 24th.

He did

<br>the clinical trials with Enbrel on Poly Articular kids.</blockquote>

</html>

[Guest guest]

does take a steroid on the 'off days' but a maintenance dose of 1/2mg

which is equal to 5 mg of natural steroid or Prednisone. This is because her

Adrenal glands probably are not producing steroids at the moment and it is a

way of replacing that.

[Guest guest]

I am glad to here that is doing better I hope that Embral is

some thing that can work for good luck

>From: Skis@...

>Reply- onelist

> onelist

>Subject: [ ] update

>Date: Wed, 4 Aug 1999 19:15:42 EDT

>MIME-Version: 1.0

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>

>From: Skis@...

>

>The liver doctors said they don't need to see us again as the liver is

>almost

>back to normal. However now her liver can produce all the essential

>proteins

>for an accurate SED rate it has gone up again to 74! She is moving very

>well

>with no visible pain, but then again she is on the equivalent now of 90 mg

>Prednisone every other day so she should be! We too are looking into Enbrel

>and have a meeting with DR Dan Lovell from Cincinnati on August 24th. He

>did

>the clinical trials with Enbrel on Poly Articular kids.

>

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

[Guest guest]

Hi :

I am so glad 's liver problems are resolved. What a relief. Hopefully,

soon everything else will go back to normal. Just be patient and hopeful ...

Take care

[Guest guest]

The Doc said to bring down the dose by 1 mg every three weeks. 1 mg = 10 mg

Prednisone I think. Right now there seem to be all normal temps and no

inflammation. In other words it looks like classic remission. BUT I know

differently based on her SED rate. It's rather a false sense of security

because the Steroids are so high...it's the old dust under the rug syndrome.

[Guest guest]

,

Thank you for your support. I know every parent hopes that 'symptom free'

means no more JRA. Having recently been through such an awful time with her

liver I have this nasty thing lurking in the back of my mind (not so far back

actually) that it could happen again as seems very sensitive to

medicines. I think we will be on a long hard road with the drugs if not the

JRA.

[Guest guest]

<!doctype html public " -//w3c//dtd html 4.0 transitional//en " >

<html>

Georgina wrote:

<blockquote TYPE=CITE>Well, I'm very curious about how Josh's labs look,

now that he's been taking the injectable MTX. Yesterday was his 5th shot.

The nurse will call me later today to let me know. I think it will be good

news. Josh seems to be doing great. He has a nodule on his wrist but it's

not causing any pain. And even the mornings have been going really well.

Everything seems pretty good over here :-)</blockquote>

Hi,

<p>I'm just about ready to go pick up the children from school but I just

got the phone call I was waiting for and wanted to share the news with

you, so i'm back online for a few minutes. Last week Thursday Josh had

his blood work done. That was after getting the MTX by injection for 3

weeks. On the same day as his 4th shot. Well, his SED rate has come down

to 32. That's really great for him. His all-time lowest ever was a 28.

His white blood cell count is still high but has come down a bit too, to

41.3 Last time it was over 48. Hemoglobin and hematocrit are still low,

at 9.2 and 30 respectively but the nurse was saying that happens a lot

with chronic illness and when using MTX. It looks like things are heading

in the right direction, though.

<p>Well, this news has perked me up a bit. I sure hope everyone has a safe

and happy weekend!

<p>Take care,

<br>Georgina</html>

[Guest guest]

Hello everyone,

Just a update on myself. Afew days ago I lost my ability to speak. My new

Holistic doctor put me in the hospital. Got me a new neroligist and got my

uroligist. Started running tests mri's,x-rays,physical therapist,occupational

therapist,.Mri's still show nothing but they all ran tests on me for lyme

disease,food allergies,eviormental posioning, all were negtive. So did a

brain scan today and let me out under a 5 year watch for ms and put me on

xanax, and neuerontin. So I geuss were getting somewhere.So a I said this is

just a update.

love light and laughter

Raven

[Guest guest]

Hello everyone,

Just a update on myself. Afew days ago I lost my ability to speak. My new

Holistic doctor put me in the hospital. Got me a new neroligist and got my

uroligist. Started running tests mri's,x-rays,physical therapist,occupational

therapist,.Mri's still show nothing but they all ran tests on me for lyme

disease,food allergies,eviormental posioning, all were negtive. So did a

brain scan today and let me out under a 5 year watch for ms and put me on

xanax, and neuerontin. So I geuss were getting somewhere.So a I said this is

just a update.

love light and laughter

Raven

[Guest guest]

is still doing great. This is the last week of her steroids. She is

having three doses of steroid every three days. That's acutally .125mg of

Dexamethasone (X 10 to equal prednisone). the doctor had said three weeks of

alternate day at this doese then to stop but I did two weeks and now what

works out to nine days (three doses) of my way! I see it as a tiny boost for

tied adrenals. Then she will have more blood work done on the 19th Jan and

if all is well we'll stop our monthly visits and go less often. She even grew

2 cm last month!! We are in Utah for Christmas and the New year and she has

been skiing like a demon, something I though she wouldn't ever be able to do

after what we went through this summer. I couldn't even imagine how she was

going to get her foot into a ski boot. LUCK is with us for now at least.

HAPPY NEW YEAR EVERY ONE!

[Guest guest]

Hello,

Oh, . That is so nice to hear. I'm so happy for , and for the

whole family! You must be feeling so relieved now that the worst is

over. And hopefully, there won't ever be a repeat performance! I hope

this leads to a complete remission, that lasts forever. Do send us an

update, after the January doctor visit, okay? And tell that

Josh was very excited to hear about her skiing adventure! He still

misses that we have no snow here in Hawaii. (Not me, though !)

All the Best,

Georgina

Skis@... wrote:

> is still doing great. This is the last week of her steroids. She is

> having three doses of steroid every three days. That's acutally .125mg of

> Dexamethasone (X 10 to equal prednisone). the doctor had said three weeks of

> alternate day at this doese then to stop but I did two weeks and now what

> works out to nine days (three doses) of my way! I see it as a tiny boost for

> tied adrenals. Then she will have more blood work done on the 19th Jan and

> if all is well we'll stop our monthly visits and go less often. She even grew

> 2 cm last month!! We are in Utah for Christmas and the New year and she has

> been skiing like a demon, something I though she wouldn't ever be able to do

> after what we went through this summer. I couldn't even imagine how she was

> going to get her foot into a ski boot. LUCK is with us for now at least.

> HAPPY NEW YEAR EVERY ONE!