Re: Relation of enzyme levels to damage

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Elena Pheasant

_________________________________________________________

June 1, 1999

Elena, I can't say whether your elevated enzymes means increased

inflammation. Unfortunately the main thing to know is that elevated enzymes

(anything over normal) is not good and means inflammation. Normal enzymes

does not necessarily mean no inflammation and there is not always a

correlation between the amount of inflammation and how high over normal the

enzymes are. I agree with Patty, if your enzymes are over normal, no matter

how much, you need to be treated with meds to get them in line. It is

possible that you can get off of the meds, but it will require patience. The

main thing is to get your enzymes down to normal in any way you can.

Also, I fully understand your concern about the physical appearance side

effects of the meds. This is not easy. Until my face started deflating

somewhat (as I decreased the prednisone), I didn't want any pictures of me

taken. All I can say is that it's good you are honest about how important

this is to you and there are things you can do to work on overcoming the

emphasis on appearance while still making the best of your physical

attributes.

Warmly, Roxanne

P.S. Tomorrow I go off prednisone all together. I am hoping and praying I

can handle it.

June 2, 1999

From Lisel:

Roxanne,

I have had elevated liver enzymes for a year now and we are still in the

process of getting a diagnosis. Well I know that I have it but I have

moved and changed Dr. and I still have not had a Dr. tell me that I

definately have AIH. I am ana positive. Have you been tested for the

ANA's? I am 1:80. Not real high.

I go to the GI on 25th and will probably start the meds. I am worried

about the effects...especially the ones that are of a more emotional

nature. I do child care and I hope the meds don't stress me out or make

me the wicked witch of the west! lol....

Hope to hear from you soon.

Lisel

June 2, 1999

From Lisel

ELENA,

How do you feel? I am wondering what your symptoms are since you have

the slight inflamation. I am getting my diagnosis for sure on the 25th

and sometimes I am really tired, but I tell myself that I am just being

lazy. However, over all I think I feel well, or just have not felt well

so long that I have forgoten. lol.

I would love to hear from you.

Hope you are feeling well! Lisel

June 2, 1999

From Lisel:

Roxanne,

Do you feel better when on the Pred? Do you have damage to your liver?

Sorry to be so blunt. I really appreciate the response to my

questions. I am still trying to believe that I really have the

disease. All tests point there but I feel pretty good (most of the

time) Infact, It was a blessing that I found the disease at all. This

may sound funny to some, but the Lord led me to find my disease by

prompting me to get life insurance. How do I know it was the Lord?

Well the feeling that I needed to get life insurance came to me often.

I ignored it for a couple of months. My husband wanted to loose weight

before applying for more ins, I thought that was reasonable. But one

day I was washing dishes and not thinking of anything else and it came

again loud and clear. Well I dried my hands and called an agent. If I

had not tried to get the ins. I would not have found this

problem...until it had caused a lot of damage. I am not sure how fast

it progresses, but my enzymes have been high for a year without

treatment. Doc's seem to think I am ok because they have not prescribed

yet.

I am sure I will start on the 25th when I see my GI.

Well I don't know why I had to tell my whole life story...lol...but I do

have to thank the Lord for leading me to this before I was really in

trouble. And I thank all of you for listening to me!!!

Sincerely,

Lisel

June 2, 1999

Roxanne,

Good luck with staying off the meds. I pray to have that experience some

day.

SueB.

----------

> From: CREE8V1@...

> onelist

> Subject: Re: [ ] Relation of enzyme levels to damage

> Date: Wednesday, 2 June 1999 12:47

>

> From: CREE8V1@...

>

> Elena, I can't say whether your elevated enzymes means increased

> inflammation. Unfortunately the main thing to know is that elevated

enzymes

> (anything over normal) is not good and means inflammation. Normal

enzymes

> does not necessarily mean no inflammation and there is not always a

> correlation between the amount of inflammation and how high over normal

the

> enzymes are. I agree with Patty, if your enzymes are over normal, no

matter

> how much, you need to be treated with meds to get them in line. It is

> possible that you can get off of the meds, but it will require patience.

The

> main thing is to get your enzymes down to normal in any way you can.

>

> Also, I fully understand your concern about the physical appearance side

> effects of the meds. This is not easy. Until my face started deflating

> somewhat (as I decreased the prednisone), I didn't want any pictures of

me

> taken. All I can say is that it's good you are honest about how

important

> this is to you and there are things you can do to work on overcoming the

> emphasis on appearance while still making the best of your physical

> attributes.

>

> Warmly, Roxanne

>

> P.S. Tomorrow I go off prednisone all together. I am hoping and praying

I

> can handle it.

>

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

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June 2, 1999

Lisel,

I want to comment on your perception that the Lord led you to your

diagnosis. I can definitely relate to that. I had a similar experience,

although I interpreted the whole thing differently since I am not religious.

To me, I feel

I have someone looking out for me and guiding me, such as a past relative,

or helpful spirit. I haven't had a blood test since Grade 7 because of a

phobia, nor could I swallow pills. In December, someone informed me I can

have blood taken from any vein, not only the vein on the inner elbow. So,

when I had my physical in January, I asked them to do a blood test for

everything, just to see if I could overcome this phobia. Now, no problems

(and they discovered my high liver enzymes). They take blood from my lower

arm. I also had my placement at a hospital, and saw them giving the

patient's their pills with applesauce. Now, I have no problem with that

either. These are two things I never thought I would do easily. My family

and friends can hardly believe it. I guess some people would call that a

coincidence. I choose to believe otherwise. It's nice to think of someone

else helping me along. Gives me more strength when I need it.

>From: <cartersq@...>

>Reply- onelist

> onelist

>Subject: Re: [ ] Relation of enzyme levels to damage

>Date: Wed, 02 Jun 1999 16:10:35 +0400

>

>From: <cartersq@...>

>

>From Lisel:

>

>Roxanne,

>

>Do you feel better when on the Pred? Do you have damage to your liver?

>Sorry to be so blunt. I really appreciate the response to my

>questions. I am still trying to believe that I really have the

>disease. All tests point there but I feel pretty good (most of the

>time) Infact, It was a blessing that I found the disease at all. This

>may sound funny to some, but the Lord led me to find my disease by

>prompting me to get life insurance. How do I know it was the Lord?

>Well the feeling that I needed to get life insurance came to me often.

>I ignored it for a couple of months. My husband wanted to loose weight

>before applying for more ins, I thought that was reasonable. But one

>day I was washing dishes and not thinking of anything else and it came

>again loud and clear. Well I dried my hands and called an agent. If I

>had not tried to get the ins. I would not have found this

>problem...until it had caused a lot of damage. I am not sure how fast

>it progresses, but my enzymes have been high for a year without

>treatment. Doc's seem to think I am ok because they have not prescribed

>yet.

>

>I am sure I will start on the 25th when I see my GI.

>

>Well I don't know why I had to tell my whole life story...lol...but I do

>have to thank the Lord for leading me to this before I was really in

>trouble. And I thank all of you for listening to me!!!

>

>Sincerely,

>

>Lisel

>

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

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June 2, 1999

Lisel, I was one of the minority of people with AIH to not have a positive

ANA. A positive ANA is definitely one of the markers, but some people test

negative on all the markers and are diagnosed by process of elimination like

me. The other way to reinforce the diagnosis is that my enzymes dramatically

went down to 16 and 17, once I started prednisone.

Roxanne

Oh, EBV is Epstein Barr Virus

June 2, 1999

Lisel

I have also been trying to be dx for last 18mos. I still can't believe how

difficult it is to diagnosis AIH. I also have a positive ANA was 1:160 and

now it is 1:320. My biopsy showed pretty significant damage but still no

dx-they just keep writing abnormal serum enzyme levels. They have been high

since 1994. Hopefully you will have answers soon too.

Susie

June 3, 1999

Lisel,

My ANA is 1:320. I also have AIH and have been undergoing treatment for

about 4 years. I am an elementary school teacher and have been able to

continue teaching through it all. As far as me, I di dget tired a little

easier and just changed my lesson plans a little. I was a little less

tolerant, but not very much. Now, with my husband, watch out! I guess it's

just like PMS, I never took it out on my kids, but my husband was another

story. I feel bad about that, but he just seems to irritate me more, poor

guy. I think youwill be fine with the kids. I love kids and you must too in

order to be in that field, we know it's not their fault. It is easier to rem

ember that with them. Take care and keep us posted on your progress.

Tami (AIH) chollyfam@...

June 3, 1999

Lisel,

This is a strange coincidence, but I found out about my disease while trying

to raise my life insurance too! We had had our second child, and I felt like

I wanted to make sure they were taken care of, just to be safe. After being

turned down, I was told to see my doctor right away. Otherwise, I would have

discovered it at a much later stage. The Lord was watching out for me as

well!

Tami (AIH) chollyfam@...

June 3, 1999

the same could be said about me, they started me on predisone

and they saw the improvements on the blood test, as well,

miguel

June 3, 1999

From Lisel:

Tammy,

Thank you for your e-mail. It was quite reassuring! I will prepare my

husband to duck! lol..

Thanks again

Lisel

June 3, 1999

Hi Roxanne,

My son,Tyler and I are new to all this as far as the liver is concerned. He

has Crohns and Rhuematoid Arthritis for the last 6 or so years...the AIH and

PSC were just diagnose since this past Easter.

He has weekly labs for the last 1 1\2 and they been keeping an eye on liver

enzymes. Thats is what made them do the liver biopsy and then the ERCP

finding the PSC and AIH. They started him on atigal and withing two weeks his

counts did start to come down...Unfortunately the following week they started

to climb...ALT's and AST;s back in the 100's and GGT's back to 500 " s. GGt's

had been in the 900's before treatment. This is concerning me because as you

say it is important to get those counts down and preserve that liver. He

goes for labs today...Will see how we are doing...

Hope you are feeling well thanks for you info..

Keep in touch

Luanne Ty's mom

June 3, 1999

FROM LISEL

Elena,

What enzyme are you talking about being 200? It is a little strange how

the numbers go. Some are higer than ever while others are lower right

now for me. If you don't mind I would like to see your numbers. I

would give you mine but I have misplaced my latest results...ugh! But my

ALT is usualy 4 to 5 times higher than norm and AST is about 3 times the

norm.

I am not much help in the meds area, since I will only be starting

myself on the 25th.

Take care and I will talk to you again soon.

Lisel

June 3, 1999

Hi Lisel,

I had slight inflammation diagnosed on my biopsy about a month ago, but

since then the enzymes has risen from 94 to 200. My doctors said that i

could now have more than slight inflammation on my liver. The symptoms

i have had since my enzymes have been elevated (since april) is

fatigue, liver tenderness/upper right ab pain and abdominal discomfort.

Today thought i am feeling a little worse. I feel like a have a fever

and the ab and upper right discomfort is a little worse. Now again I do

have light colored stools (i am sure you wanted to know that part!)

As my enzymes have rapidly risen recently my doctor wants me to go on

prednisone for about 6 weeks and then just go on immunosuppresents for

a long time. Have you or anyone else heard of this type of treatment. I

am kind of pleased that i only have to go on prednisones for about 6

weeks. Does anyone know the side effects of staying on

immunosuppressants only, does it have weight gain etc.

Thanks

Take Care

Elena

--- <cartersq@...> wrote:

> From: <cartersq@...>

>

> From Lisel

>

> ELENA,

>

> How do you feel? I am wondering what your symptoms

> are since you have

> the slight inflamation. I am getting my diagnosis

> for sure on the 25th

> and sometimes I am really tired, but I tell myself

> that I am just being

> lazy. However, over all I think I feel well, or

> just have not felt well

> so long that I have forgoten. lol.

>

> I would love to hear from you.

> Hope you are feeling well! Lisel

>

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

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===

Elena Pheasant

_________________________________________________________

June 3, 1999

Hi Roxanne,

Thanks for your response.

Good luck getting off prednisone...Im saying my prayers!

Elena

--- CREE8V1@... wrote:

> From: CREE8V1@...

>

> Elena, I can't say whether your elevated enzymes

> means increased

> inflammation. Unfortunately the main thing to know

> is that elevated enzymes

> (anything over normal) is not good and means

> inflammation. Normal enzymes

> does not necessarily mean no inflammation and there

> is not always a

> correlation between the amount of inflammation and

> how high over normal the

> enzymes are. I agree with Patty, if your enzymes

> are over normal, no matter

> how much, you need to be treated with meds to get

> them in line. It is

> possible that you can get off of the meds, but it

> will require patience. The

> main thing is to get your enzymes down to normal in

> any way you can.

>

> Also, I fully understand your concern about the

> physical appearance side

> effects of the meds. This is not easy. Until my

> face started deflating

> somewhat (as I decreased the prednisone), I didn't

> want any pictures of me

> taken. All I can say is that it's good you are

> honest about how important

> this is to you and there are things you can do to

> work on overcoming the

> emphasis on appearance while still making the best

> of your physical

> attributes.

>

> Warmly, Roxanne

>

> P.S. Tomorrow I go off prednisone all together. I

> am hoping and praying I

> can handle it.

>

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

> With more than 18 million e-mails exchanged daily...

>

> ...ONElist is THE place where the world talks!

>

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

> Please support the American Liver Foundation!

>

> 1.) To subscribe send e-mail to

> 2.) To UNsubscribe send to

> 3.) Digest e-mail format send to

> 4.) Normal e-mail format send to

>

===

Elena Pheasant

_________________________________________________________

June 4, 1999

Roxanne,

I don't think that my levels were ever terribly high, compared to some of

those I've read here. One thing in my early (pre-diagnosis) lab tests were

that just about everything was either above or below normal. Yet, at the

time I was very sick and biopsy showed stage IV cirrhosis. A couple of

months ago I showed my early lab results to my current Hepatologist (the

Hepatologist at Scripps has had them from the start) and he commented that

I was " very, very sick " when the tests were done. So now most of the labs

are normal, yet without another biopsy they conclude that I'm in remission.

I guess they don't have to establish cirrhosis since it's already

documented. Also, compared to any and every other procedure they've done or

might do, my doctors consider a liver biopsy to be among the highest risk

for serious bleeding and clearly, they don't want to do another soon.

Take care,

Geri

June 4, 1999

Lisel, I'm sorry I'm just getting a chance to answer your questions. The

prednisone has both good and bad side effects. It took away the discomfort I

was feeling in my side. It gave me energy that I didn't have. I didn't feel

like I needed to sleep 2 hours in the afternoon anymore. But it did make me

agitated and increase my appetite and of course cause puffiness in my

appearance.

Yes, I have damage to my liver. In fact, I have quite a bit. My damage is

considered a 3 on a scale of 1-4. I'm hoping we can slow it down to a crawl

with just the azathioprine (Imuran).

All the best, Roxanne

June 4, 1999

Luanne, Are the docs considering putting your son on prednisone and

azathioprine (Imuran) since he has AIH?

Roxanne

June 7, 1999

Roxanne

We see his doc on the 29 of June. He is already taking actigal for the liver

and waiting to see if enzymes come down..He already takes 9 other meds for

his RA and Crohns. Some of them are cyclorsporin,enbrel,1 1\2 pred,celebrex,

trentenol,etc. Hopefully labs will start to look better soon...They avoid

more pred...in the past he has been on 60 many times and weening off

slowly...He has very brittle bones...Had bone density test and they are very

bad...We will find out on the 29th to see the next set...Hope it will a

possitive one...Thanks for asking

Luanne Ty's mom

June 11, 1999

Lisel

Sorry it took so long to get back to you as I have been away from the

computer for a whole week! Firstly thanks for your E-mail on weight

gain it helped me feel alot better about the whole gain thing.

My SGPT is 200 and the sgot is around 94. That was about 2 weeks ago

and i think it has risen since then. Im getting another test next week

before i go on meds.

elena

--- <cartersq@...> wrote:

> From: <cartersq@...>

>

> FROM LISEL

>

> Elena,

>

> What enzyme are you talking about being 200? It is

> a little strange how

> the numbers go. Some are higer than ever while

> others are lower right

> now for me. If you don't mind I would like to see

> your numbers. I

> would give you mine but I have misplaced my latest

> results...ugh! But my

> ALT is usualy 4 to 5 times higher than norm and AST

> is about 3 times the

> norm.

>

> I am not much help in the meds area, since I will

> only be starting

> myself on the 25th.

>

> Take care and I will talk to you again soon.

>

> Lisel

>

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

> Have you entered ONElist's " Grow to Give " program?

>

> Deadline is June 19. Join now to win $5000 for your

> charity of choice.

>

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

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>

> 1.) To subscribe send e-mail to

> 2.) To UNsubscribe send to

> 3.) Digest e-mail format send to

> 4.) Normal e-mail format send to