Re: to introduce myself

May 5, 1999

Hi: Tammy:

I have been AIH since October 1997 and in March of 1998 I also went to the

Mayo Clinic and had all the tests and bio of the liver etc. My main Doctor

for AIH is Dr. Cjaza and I really respect the man. He is really caring and

never forgets you. I see him every six months so I go back in September. I

am on a study now with him for budneside. This medicine has not been

approved by the FDA in the US for use for AIH but has in Canada. I asked

him about it in March and I started on it March 29th and at that time I

started dropping my Prednisone and Imuran. This is my last week before I go

with just the Budneside. I am hoping that this will work because of the side

effects from the other medicines.

The group is great and they have help me in many ways.

Sue AIH

WI

May 5, 1999

Hi Tammy:

Welcome back to the group. You asked to hear from those of us who

have AIH. Well, in my case, it is past tense. I had AIH for 11 years, being

diagnosed in 1984, and transplanted in May 1995 at University of Pittsburgh

Medical Center. I probably had every symptom of AIH imaginable, so if you

would like to email me with any questions, or if I can be of any assistance

to anyone else with AIH, please let me know. (I'm so excited because I am

approaching the 4th anniversary of my liver transplant which was on 5/21/95

..... and I have been fortunate enough to meet my donor family and have a

wonderful relationship with them.)

Oh, by the way, I live in Elmira, NY, which is in upstate New York

about 5 hours from NYC.

My email address is: Bonjo46@...

Bonnie Patten

AIH and post

transplant

May 6, 1999

Welcome back Tammy,

I'm from Connecticut, with AIH since July 1998. I've had ups &

downs with meds, currently only on immuran. I'm currently going though lots

of test and Dr.'s trying to discover the source of my muscle aches and pains

when I'm not on Prednisone. This disease is so confusing to both patients

and Doctors.

May 6, 1999

Dear Tammy:

Welcome back to the group! Sorry to hear that things are acting up for you.

It must have been nice not to have to take any medication for a while. I'm

on 'lifetime' prednisone and even though my LFT's have been good for more

than a year, I have been unable to get below 8 mg. I've had a lot of trouble

with side affects. I've got 'Cushing's Syndrome' from the prednisone, and my

blood sugar has been haywire. I'd been suffering from dizzy spells for quite

a while and we've finally figured out that it's blood sugar related. So it's

off to the endocrinologist later this month to see if I can get it under

control. I'm not positive, but I believe it's related to the prednisone.

I've also had a lot of problems with joint pain (mostly ankles and my left

shoulder) and I tear ligaments real easily.

I hope that you are feeling better soon.

Kathy (AIH)

Seattle area

May 6, 1999

Hi Tammy,

I also have AIH and go to Mt Sinai in NY periodically to see hepatologist

there to be evaluated for transplant and I see a gastro close to home in NJ.

I have been off meds for a couple of years now but while liver damage is

substantial my counts are pretty good as far as enzymes are concerned.

Welcome to the group ( or welcome back)

Deb in NJ

May 6, 1999

Tammy,

Nice to have you again with this group. I am sorry to hear that you

had to have surgery--I hope all is well. I don't think any of us like the

medicine train, but are forced to go for the ride in order to keep

surviving. Hopefully you will be able to stay off of them a little longer.

I can attribute that the meds. make me forget things that I should really

remember. The doctors think I am crazy when I tell them that I am having

trouble with memory.

I will keep this short. A warm welcome and my prayers and thoughts

will be with you.

Dorothy

> [ ] to introduce myself

>

> From: TammyAnnG@...

>

> Hello! My name is Tammy, I am 37 and I have AIH. I was diagnosed in 1996

> ,

> have had two liver biopsies, have been evaluated at the Mayo Clinic by Dr.

> A.

> Cjaza and am currently under care at Med Mt Sinai in Manhattan. I am also

>

> currently on a " medication vacation " but feel sure that my doctor will be

> putting me back on the Imuran/Prednisone combo very shortly as my labs

> have

> gotten higher and higher in recent months. I don't exactly do well on

> these

> drugs, but then I also have been feeling very tired and not so healthy

> lately.

>

May 6, 1999

Hi Tammy,

You're off both pred and Imuran? Good to know that it's possible to go off

both, but I wonder, when you're in remission then have a relapse, are you

worse off after the relapse than before the remission? I don't know if

that makes sense, but I worry about weaning off pred, for example, and then

finding out that I've deteriorated and wouldn't have if I'd taken the drugs

without a lapse. Any experience with that?

Take care,

Geri

May 7, 1999

Sue

Tomorrow I find out if I can stay on budisonde! to more it's the big

day!! I might have to go on large dose's of pred if it has not worked.

May 7, 1999

Congratualtions!

Its so nice to hear a success strory. Is your AIH cured? and are you on

any med. I was also wondering if you are experiencing any symptoms now?

Thanks

Elena

--- Bonjo46@... wrote:

> From: Bonjo46@...

>

> Hi Tammy:

>

> Welcome back to the group. You asked to hear from

> those of us who

> have AIH. Well, in my case, it is past tense. I

> had AIH for 11 years, being

> diagnosed in 1984, and transplanted in May 1995 at

> University of Pittsburgh

> Medical Center. I probably had every symptom of AIH

> imaginable, so if you

> would like to email me with any questions, or if I

> can be of any assistance

> to anyone else with AIH, please let me know. (I'm

> so excited because I am

> approaching the 4th anniversary of my liver

> transplant which was on 5/21/95

> .... and I have been fortunate enough to meet my

> donor family and have a

> wonderful relationship with them.)

>

> Oh, by the way, I live in Elmira, NY, which is in

> upstate New York

> about 5 hours from NYC.

>

> My email address is: Bonjo46@...

>

> Bonnie Patten

> AIH and post

> transplant

>

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

> Looking for a fun, easy way to stay in touch with

> family members?

>

> Create a ONElist community just for your family!

>

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

> 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

> 4.) Normal e-mail format send to

> -normalonelist

>

===

Elena Pheasant

_________________________________________________________

May 7, 1999

Hi tammie!

Nice to hear your story. I hope you can keep us posted on your updates.

Im a newbie to AIH and this list. So I too am very interested in

getting to know other AIH. I was diagnosed last week. Got a biopsey

yesterday, I presume to find out what stage im at. I havent even tried

any of those lovely meds yet. So here i am waiting and waiting to find

out. Also, I had an EEG recently which the doctor noted was abnormal.

He said that the background was slow or something?! Hes suspecting that

i have encelapothy. Is that possible this soon. Im fatigued and have

confusion and memory loss.

Anyway thats enough from me, Hope i can get to know you and others on

this list.

Take care of yourself

Elena

--- TammyAnnG@... wrote:

> From: TammyAnnG@...

>

> Hello! My name is Tammy, I am 37 and I have AIH. I

> was diagnosed in 1996 ,

> have had two liver biopsies, have been evaluated at

> the Mayo Clinic by Dr. A.

> Cjaza and am currently under care at Med Mt Sinai

> in Manhattan. I am also

> currently on a " medication vacation " but feel sure

> that my doctor will be

> putting me back on the Imuran/Prednisone combo very

> shortly as my labs have

> gotten higher and higher in recent months. I don't

> exactly do well on these

> drugs, but then I also have been feeling very tired

> and not so healthy lately.

>

> I was a member of this group over a year ago and

> left to form a smaller more

> intimate group (we are called the Liverites and

> have about 45 members),but

> recently have been encouraged to rejoin. So here I

> am!

>

> I am the Treasurer of the Greater New York Chapter

> of the American Liver

> Foundation and am just so proud of Linie and her

> recent honor in Washington.

> I was scheduled to go on that trip, but had to have

> some surgery at the last

> minute and was unable to attend......next year I am

> going for sure! I would

> have loved to have met Linie in person.

>

> I have three children and live on Long Island in New

> York.

>

> I am very interested in meeting people who have a

> diagnosis of AIH. This

> disease is so rare and confusing.

>

> Well, I am sure there are some members that I may

> remember from a few years

> ago although then I was on meds and my mind was very

> fuzzy. Looking forward

> to meeting you all.....Tammy

>

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

> Did you know that

> http://www.ONElist.com

> More than 3.5 million people are using 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

> 4.) Normal e-mail format send to

> -normalonelist

>

===

Elena Pheasant

_________________________________________________________

May 8, 1999

Taking the meds is the easy part Hun Hoping they work is the tough part. I

have been on Prednisone 7 months & now have been taken off as my counts are

unchanged & my bone density is extremely low. Walking is an effort & I have

had to cut back on my work schedule. So now I guess I get to watch this

disease progress through me....Sorry to sound Bitchy but I just got this bit

of news Via my Voice mail today. Doctors can be so callous.

Rose

XXChasteXX

May 8, 1999

Thanks geri... I'm presently on zero medication except Prednisone which I

have to wean off gradually. By then I'll see the bone specialist For a new

regiment.

May 8, 1999

Hi Rose,

<< Doctors can be so callous >>

Some are, that's for sure. Someone told me that these aloof doctors need

to go back for a refresher course in Bedside Manners 101.

Are you also taking Imuran? Any hormones? Calcium?

Take care and cheer up. This disease has too many ups and downs. Sounds

like it's time for you to go through some of the " ups " .

Geri

May 8, 1999

hello eveyone I am kind of new here. My name is leslie and I have auto

immune hepatits. I am 17. I was diagnosed at 14. I like to write poetry,

sing, act, and hang out with my friends.

I just thought I should introduce my self...

Lelsie

>From: Chollyfam@...

>Reply- onelist

> onelist

>Subject: Re: [ ] To introduce myself

>Date: Sat, 8 May 1999 13:00:46 EDT

>

>From: Chollyfam@...

>

>Hi all! What is PBC? I keep seeing it in the e-mails.

>

>Thanks!

>

>Tami

>

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

>Do you know how many communities live at ONElist?

>http://www.ONElist.com

>More than 140,000 with nearly 1,000 new ones joining each day!

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

>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

>4.) Normal e-mail format send to -normalonelist

_______________________________________________________________

Get Free Email and Do More On The Web. Visit http://www.msn.com

May 8, 1999

I am a junior.

The summer after my eigth grade year I got really sick. In sixth grade I

had weighed about 180 lbs buy the time I hit eigth grade I weighed only 120

lbs. I wanted to sleep all the time and my side hurt tremendously. I

didn't eat much.

My parents thought I had an eating dissorder but when I went to see a doctor

he did some blood test and everything was out of wack. My thyroid was

really hypo so he sent me to see a thyroid specialist. The thyroid

speciallist took one look at me and said i was too yellow and did some more

test. My liver emzymes were really high so he sent me to a liver specialist

and he did a liver biopsy. It reaveled that I had AHI and cirrohsis.

I am doing much better than i was, but I get sick a lot from meds.

>From: Chollyfam@...

>Reply- onelist

> onelist

>Subject: Re: [ ] To introduce myself

>Date: Sat, 8 May 1999 13:27:57 EDT

>

>From: Chollyfam@...

>

>Welcome !

>

>How did they find out you had AIH at 14? You must be coming to the close

>of

>a school year. Is it your junior or senior year?

>

>Tami

>

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

>Congratulations to TOWERSHIGH, our latest ONElist of the Week.

>

>Visit our homepage and share with us how ONElist is changing YOUR life!

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

>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

>4.) Normal e-mail format send to -normalonelist

>

_______________________________________________________________

Get Free Email and Do More On The Web. Visit http://www.msn.com

May 8, 1999

XXChasteXX

Sorry to hear about your news. You will be in my prayers.

Tami

May 8, 1999

Hi all! What is PBC? I keep seeing it in the e-mails.

Thanks!

Tami

May 8, 1999

Patti,

I too am new to the group, but already it has been a blessing to me. Some of

the fear is lessened when you find you are not alone. These guys will

support you every step of the way, and the info is very helpful. Good luck

and keep us posted on how you are doing!

Tami

May 8, 1999

Welcome !

How did they find out you had AIH at 14? You must be coming to the close of

a school year. Is it your junior or senior year?

Tami

May 8, 1999

I am on Immuran, synthroid and paxil.

It was very hard for everyone. It was very finacially stressful. Now we

get help with medical bills.

I missed a lot of school. My freshman year I missed about 40 days but still

managed to stay on the 3.0 honor roll, and last year I missed about 70 days

and still stayed on the honor roll, and this year I have missed probably 80,

but now I don't go to school full time. I go for two hours a day and the

rest I do independant studies. I still get credit and I still get to

graduate with my class.

>From: Chollyfam@...

>Reply- onelist

> onelist

>Subject: Re: [ ] To introduce myself

>Date: Sat, 8 May 1999 15:22:31 EDT

>

>From: Chollyfam@...

>

>,

>

>What meds are you on now? It's amazing to me that you got that sick that

>young. Must have been scary for you and your parents. Glad to hear you

>are

>better. Did you have to miss a lot of school?

>

>Tami

>

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

>Did you know ONElist has over 300 Star Wars lists?

>

>Join one today!

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

>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

>4.) Normal e-mail format send to -normalonelist

_______________________________________________________________

Get Free Email and Do More On The Web. Visit http://www.msn.com

May 8, 1999

Geri,

They tried doing that to me and it didn't work. I wish it would have. I

get so sick of taking pills, but i guess it is worth it.

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

>Reply- onelist

> onelist

>Subject: Re: [ ] to introduce myself

>Date: Sat, 08 May 1999 13:33:16 -0700

>

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

>

><< I'm presently on zero medication except Prednisone which I

>have to wean off gradually. By then I'll see the bone specialist For a new

>regiment. >> Good for you! I hope it works out for you and you never have

>to deal with Prednisone again. I hope that someday my doctors decide to

>see if I can get along without Imuran, but the price is too high if that

>doesn't happen to work out for me.

>Geri

>

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

>Who offers the richest group communications tools on the Internet?

>

>Answer: ONElist. Check out our homepage for details!

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

>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

>4.) Normal e-mail format send to -normalonelist

_______________________________________________________________

Get Free Email and Do More On The Web. Visit http://www.msn.com

May 8, 1999

I have tried for so long to find someone with the same disease. I was

beginning to think I was the only one who had it.

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

>Reply- onelist

> onelist

>Subject: Re: [ ] to introduce myself

>Date: Sat, 08 May 1999 14:02:14 -0700

>

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

>

>,

>Some people can't stop taking Prednisone once they've taken it for awhile.

>I might be one of them but I'll try one more time. The last time was a

>disaster and until I started back on Prednisone, I didn't realize how much

>better it was making me feel.

>

>I know what you mean about getting sick of taking pills. What a shock it

>was to me, to go from taking nothing but an occasional aspirin to taking so

>many I have to keep a checklist to make sure I don't miss anything.

>

>On the plus side, you're doing well in school, you're creative, and you're

>stable right now. It's got to be tough to have a chronic disease at your

>age. All of your plans for the future have to be re-evaluated, but it only

>adds up to a change in course. One way of looking at things is that you

>know a lot more about the value of life and good health than most people

>your age. Time is on your side. They're learning more every day about how

>to deal with these diseases so the future could very well offer you a

>normal life.

>

>Take care and hang in there.

>

>Geri

>

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

>ONElist: where real people with real interests get connected.

>

>Join today!

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

>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

>

>4.) Normal e-mail format send to -normalonelist

_______________________________________________________________

Get Free Email and Do More On The Web. Visit http://www.msn.com

May 8, 1999

,

What meds are you on now? It's amazing to me that you got that sick that

young. Must have been scary for you and your parents. Glad to hear you are

better. Did you have to miss a lot of school?

Tami

May 8, 1999

I have kept a journal and therapist suggested writing an auto biography.

I've started it but sometimes I just don't want to think about it.

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

>Reply- onelist

> onelist

>Subject: Re: [ ] to introduce myself

>Date: Sat, 08 May 1999 14:48:01 -0700

>

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

>

>,

>There have been a few young women close to your age who have posted here.

>Offhand, I think of Saundra in Sweden and in Brazil. One way of

>looking at it is that we're not exactly " ordinary " . Because it's not

>always easy to diagnose, it could be that as doctors learn more about the

>disease, many more previously undiagnosed patients will emerge. Not that

>we wish that on anyone, but it's better to know and to get treatment than

>to silently grow more and more ill. One thing to look forward to is that

>many people go into remission and remissions can last for many, many years.

> Let's hope that you're right around the corner from a remission now.

>

>Meantime, someone else suggested that you might write down your thoughts

>and keep a journal. Your experiences could be extremely helpful for other

>young people and talking about how you feel, even just when writing for

>your own sake, could be good for you. Someday you might even surprise

>yourself when you look back on all this.

>Take care,

>Geri

>

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

>Want to learn more about your list users?

>

>Now you can with our new User Survey Tool - see homepage for details

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

>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

>

>4.) Normal e-mail format send to -normalonelist

_______________________________________________________________

Get Free Email and Do More On The Web. Visit http://www.msn.com

May 8, 1999

dear leslie,

i just wanted to let you know that i'm around your age too. my name's

emily, and i'm 23. i live in Canada, and have just been diagnosed. i don't

know how long i've had this. maybe the biopsy will clarify this for me?

anyways, i feel equipped to handle this now. it must have been tough for

you through your school years. sounds like you've stood your ground, and

fought for your rights, which is amazing. what do you find have been your

greatest challenges? this is such a minute thing in light of all other

factors, but one thing i'm finding is a huge change is not being able to

drink alcohol. before this, i've always drank along with my friends. my

boyfriend's father is also a wine connoisseur, so it's a social normalcy at

their house to share wine together (they're also czechoslovakian -

tradition?). anyways, i know this probably one of the smaller adjustments,

but it's a loss just the same (especially now that it's summer)...i hope

this doesn't offend anyone..

take care,

emily