Concerned

June 25, 1999

:

I was put on 30 mg of Predisone and 50 Imuran last Saturday when the

Budsonide did not work and I already have the moon face and look awful. But

rather be fat then dead. I also have lost hair just on the top. But I take

it a day at a time and hope for the best

Sue AIH

Wisconsin

June 25, 1999

S9457@... wrote:

> From: S9457@...

>

> I'm so upset. My Dr. put me on imuran last week( 50 mgs) , I am also on

> Prednisone (10 mgs) and I can already see a difference in my hairline. It

> seems the front is already thinning out. Is it too soon for this to happen?

> Is it a combination of both drugs? I'm already thinking about hats and wigs.

> I've been so upset at work. I know it sounds vain, but I can't think of any

> woman who it wouldn't bother. I'm trying to deal with the weight gain but

> this is really upsetting me. Has anyone gone completely bald?

>

> Please take a minute to respond to me.

>

> AIH-NJ

>

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

June 25, 1999

[ ] Concerned

>From: S9457@...

>

>I'm so upset. My Dr. put me on imuran last week( 50 mgs) , I am also on

>Prednisone (10 mgs) and I can already see a difference in my hairline. It

>seems the front is already thinning out. Is it too soon for this to happen?

>Is it a combination of both drugs? I'm already thinking about hats and

wigs.

>I've been so upset at work. I know it sounds vain, but I can't think of any

>woman who it wouldn't bother. I'm trying to deal with the weight gain but

>this is really upsetting me. Has anyone gone completely bald?

>

>Please take a minute to respond to me.

>

> AIH-NJ

Dear ,

When I was on prednisone I GREW hair like crazy!!! I had to go to a person

who takes unwanted hair off with hot wax. Hurts like the devil for a second

or two. I had hair growing on the sides of my face and I was growing a

mustache. I went every 6 weeks to have it removed. One of the lovely side

effects. But, it saved my life. I have been off it since last Aug. and have

only lost about 5 lbs. I had gained about 15 while on it.

Elaine

Baltimore

>

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

June 25, 1999

,

I too suffered from hair loss, as I am sure a lot of us have. Never lost

the lot, not even enough for others to notice. I sure did though. Stress

doesn't help the situation either. Try and stay calm. You will not loose it

all. I have had it happen twice so far. Stay calm.

SueB.

----------

> From: S9457@...

> onelist

> Subject: [ ] Concerned

> Date: Friday, 25 June 1999 10:39

>

> From: S9457@...

>

> I'm so upset. My Dr. put me on imuran last week( 50 mgs) , I am also on

> Prednisone (10 mgs) and I can already see a difference in my hairline. It

> seems the front is already thinning out. Is it too soon for this to

happen?

> Is it a combination of both drugs? I'm already thinking about hats and

wigs.

> I've been so upset at work. I know it sounds vain, but I can't think of

any

> woman who it wouldn't bother. I'm trying to deal with the weight gain but

> this is really upsetting me. Has anyone gone completely bald?

>

> Please take a minute to respond to me.

>

> AIH-NJ

>

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

June 25, 1999

Elaine,

It was nice to read that someone else is having trouble with facial hair. I

too have mine waxed. Since you have been off the pred. do you still have to

have the waxing done? I wonder what the future holds for me as far as it

being an ongoing thing. I am on cyclosporin and it (the doctor told me)

tends to grow excess hair also. Double edged knife for me. Coming off the

pred, but the cyclosporin keeps the hair growing. If it stops when you come

off pred. I may get away with it for 8 weeks instead of every 6. Certainly

does hurt doesn't it.

SueB.

----------

> From: ELAINE BIRKMEYER <A-lainey@...>

> onelist

> Subject: Re: [ ] Concerned

> Date: Friday, 25 June 1999 13:30

>

> From: " ELAINE BIRKMEYER " <A-lainey@...>

>

> [ ] Concerned

>

> >From: S9457@...

> >

> >I'm so upset. My Dr. put me on imuran last week( 50 mgs) , I am also on

> >Prednisone (10 mgs) and I can already see a difference in my hairline.

It

> >seems the front is already thinning out. Is it too soon for this to

happen?

> >Is it a combination of both drugs? I'm already thinking about hats and

> wigs.

> >I've been so upset at work. I know it sounds vain, but I can't think of

any

> >woman who it wouldn't bother. I'm trying to deal with the weight gain

but

> >this is really upsetting me. Has anyone gone completely bald?

> >

> >Please take a minute to respond to me.

> >

> > AIH-NJ

>

> Dear ,

> When I was on prednisone I GREW hair like crazy!!! I had to go to a

person

> who takes unwanted hair off with hot wax. Hurts like the devil for a

second

> or two. I had hair growing on the sides of my face and I was growing a

> mustache. I went every 6 weeks to have it removed. One of the lovely side

> effects. But, it saved my life. I have been off it since last Aug. and

have

> only lost about 5 lbs. I had gained about 15 while on it.

> Elaine

> Baltimore

> >

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

June 25, 1999

Hi Dixie and Roxanne and Jayne, Luanne and all,

I'm trying not to get all crazy yet but sometimes it's so hard. I've been on

the Prednisone since Novemeber of 98. Started at 30 mgs, then tapered down to

10 mgs. The Dr. tried to go lower the Pred but my enzymes tripled at 7.5 mgs.

So it was back to 10 mgs, now she put me on the Imuran. I complained to her

that I thought my hair was thin when I was only on Pred she said it could be

from the Pred. Now one of the side effects to Imuran is hair loss. I wish

someone could invent a pill that would not put on weight or make you feel

like a freak of nature. I can handle the looks regarding the weight gain, but

the hair loss will be hard on me.

I hope and pray that in time we will all be cured of this nightmare of a

disease.

Have a good weekend, sorry for complaining, but I know that you all know how

I'm feeling right now. It feels good to get messages, I've been writing but

somehow I never got many responses back. I think I had the onelist address

wrong.

Thanks for listening.

June 25, 1999

I am having a real hard time with the weight gain and hair loss, even now after

3 years of the relentless agitation. Sometimes that, in it self, is reason

enough to take the antidepressants.

I have always been thin and took pride in my appearace. Now, Buying clothes to

fit is discusting and sickening. I am really trying to stablize on this

issue... My husband is sick of hearing me complain of the weight and hair

thing.... He says he still loves me.. But that is hard for me to believe..

when I look so puffy and lumpy... My prayers are with us all that suffer the

same thing these medications bestow upon on our ego...

Love and Light

Dixie

S9457@... wrote:

> From: S9457@...

>

> I'm so upset. My Dr. put me on imuran last week( 50 mgs) , I am also on

> Prednisone (10 mgs) and I can already see a difference in my hairline. It

> seems the front is already thinning out. Is it too soon for this to happen?

> Is it a combination of both drugs? I'm already thinking about hats and wigs.

> I've been so upset at work. I know it sounds vain, but I can't think of any

> woman who it wouldn't bother. I'm trying to deal with the weight gain but

> this is really upsetting me. Has anyone gone completely bald?

>

> Please take a minute to respond to me.

>

> AIH-NJ

>

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

June 25, 1999

,

As I mentioned, when I went off the prednisone and stayed only on the Imuran,

I seem to be losing less hair and it actually seems thicker. Try giving

yourself good head massages or better yet, ask a loved one to do it. I

believe it helps.

Roxanne

June 25, 1999

Hi Everyone,

Let me introduce my self to ya'll. My name is Joan, 63 yrs young, married

for the 3rd time, (widowed the second time, divorced the 1st time). My

husband is a paraplegic confined to bed now, 20 years my junior. I have full

care of him but do get away every 2 months for a week. This is doctors

orders, he he he, love my doctor. I have 4 daughters, 5 grandchildren, 2

ferrets, and a cockatiel. And I am glad to be alive and healing.

I have high blood pressure, autoimmune hepatitis and cirrhosis. These are

life challenging diseases to me. I will survive this God willing. I cannot

take prednisone or Imuran. According to my doctor, the side effects from the

drugs are not worth the side effects. Soooo, I do what I have to do..

Have any of you read the book " The Liver Cleansing Diet " by Cabot,

M.D.? A wonderful book that I have found to be helpful. I take all the

herbs and vitamins she speaks of, I follow the diet to a tee and drink 8

glasses of water a day (which is the worse part of the program, I don't like

the taste of water, hehehe). I also eat a package of carrots and a can of

sardines a day. Both of which I do not like at all...but if it will help me

stay alive so be it.

I take meds for the high blood pressure, anti-hystamins for the itching, (my

whole body itches) and water pills. I have gained weight and look pregnant,

and have people ask me if I am indeed pregnant. I just laugh and tell them

NOOOOOO, there is just a lot of me too love.. I have liver spots all over,

does any of this bother me. No, because I am alive, am going to be healed

and know in my heart that I will be around for a long, long time. And no one

is more conscious of their looks then I am. I look in the mirror and see a

stranger looking back at me. Inside I am the same woman, the exterior has

just changed a lot, LOL.

I am retired from the accounting world. I worked for an organization that

trained Developmentally Disabled Adults in independent living skills. Very

rewarding job. I am on AOL 7 years, am addicted to it. It is my salvation on

the path set before me. I met my soulmate on line, who has Hepatitis C, and

just starting Interferon this coming week. We support each other.

Well, that is about it. I probably bored you, but thank you for listening.

Looking forward to meet you all..

Joan

June 25, 1999

Hi Dixie

Its just not fair is it. Its hard enough to cope with

the fact that we have a chronic illness, then the life

saving drugs that we have to take turns us into a

different person. wouldnt it be great if there was

some drug we could take that would counteract the side

effect of weight gain. However, im really pleased for

you that you have a husband who loves you for who you

are!

Best wishes

Elena

--- meles@... wrote:

> From: meles@...

>

> I am having a real hard time with the weight gain

> and hair loss, even now after

> 3 years of the relentless agitation. Sometimes

> that, in it self, is reason

> enough to take the antidepressants.

> I have always been thin and took pride in my

> appearace. Now, Buying clothes to

> fit is discusting and sickening. I am really

> trying to stablize on this

> issue... My husband is sick of hearing me complain

> of the weight and hair

> thing.... He says he still loves me.. But that is

> hard for me to believe..

> when I look so puffy and lumpy... My prayers are

> with us all that suffer the

> same thing these medications bestow upon on our

> ego...

> Love and Light

> Dixie

>

> S9457@... wrote:

>

> > From: S9457@...

> >

> > I'm so upset. My Dr. put me on imuran last week(

> 50 mgs) , I am also on

> > Prednisone (10 mgs) and I can already see a

> difference in my hairline. It

> > seems the front is already thinning out. Is it too

> soon for this to happen?

> > Is it a combination of both drugs? I'm already

> thinking about hats and wigs.

> > I've been so upset at work. I know it sounds vain,

> but I can't think of any

> > woman who it wouldn't bother. I'm trying to deal

> with the weight gain but

> > this is really upsetting me. Has anyone gone

> completely bald?

> >

> > Please take a minute to respond to me.

> >

> > AIH-NJ

> >

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

June 25, 1999

,

I am newly diagnosed with AIH, but have been having thinning hair for

several years already (like male pattern baldnesss, with a VERY thin patch

on top) so I think some of this may be due to the disease as well. One

thing that I find helps is a shampoo called Nioxin, which is expensive

(about $12 a bottle); they also have conditioners and scalp therapy which

costs even more. ly I get my hair cut less often and divert the money

into shampoo/scalp therapy purchases. I have a lot of new hair growth from

using it, still fine, but it's better than bald. You can only get it at

beauty supply stores or licensed costmetologists - Supercuts carries it.

You could try a bottle and see if it helps.

Lib

June 25, 1999

Roxanne,

Thank you for your kindness. My kids are the loves of my life. I consider

them my biggest accomplishments. I'm trying to calm down, but you know how it

is, it isn't always easy. I have probably cried a million tears by now. I

appreciate all the support that I have been receiving. Just wondering, I

have a tingling sensation on my scalp, and sometimes in the lower part of my

legs. Have you ever heard of such a thing? My kids spend every other weekend

with their Dad, so this weekend I;m going to get some much needed R & R.

I was diagnosed in Sep of 98 and put on Pred in November. They tried to wean

me down to 7.5mgs but my levels tripled. Hopefully the Imuran will get me off

the Prednisone. The side effects are very difficult to deal with.

I hope you feeling well, talk to you soon!

June 25, 1999

Sue B,

I'm thinking about going to yoga, to " Find some inner peace " . This has been

a rough year for me. Getting diagnosed, getting through a divorce and trying

to get my life on track. I never told my Ex about my condition. I just feel

he'd eventually try to use it against me. He was never really supportive

during our marriage so I can't see him offering much support now.

Just venting, Have a good weekend. Just being able to hear from the group

makes me feel that I'm not alone.

Thanks!

June 25, 1999

,

I hope you can get off the prednisone too. There is reason to be optimistic;

my doc tried to wean me off the prednisone when I was not on Imuran and my

enzymes skyrocketed. Once the Imuran had been in my system for several

months, we were able to get me off altogether. It feels great.

You mentioned yoga. I take yoga classes once a week and it is a very gentle

way of getting in touch with my aching muscles and joints. I highly

recommend it.

Roxanne

June 25, 1999

Hi Everyone,

I do a lot of surfing about our liver. Here are some sights I have found

that give information.

<A HREF= " http://www.aarda.org/ " >Autoimmunity AARDA American Autoimmune

Related Diseases Association

</A>

<A HREF= " http://www.hepnet.com/webs.html " >HepNet: Sites for Hepatitis

Patients

</A> <A

HREF= " http://www.gastro.com/liverpg/livdz.htm " >http://www.gastro.com/liverpg/l

ivdz.htm

</A>

<A HREF= " http://nationalhepatitis-c.org/ " >The National Hepatitis C Coalition

online

</A>

<A HREF= " http://nav.webring.com/cgi-bin/navcgi?ring=hepring;list;page=1 " >The

Hepatitis Webring

</A>

<A HREF= " http://www.hepring.org/ " >The Hepatitis WebRing Home Page</A>

<A

HREF= " http://www.gastro.com/liverpg/livdz.htm " >http://www.gastro.com/liverpg/l

ivdz.htm

</A>

June 25, 1999

What a wonderful philosophy... Thank You for sharing

Love and Light

Dixie

FOXDIANA@... wrote:

> From: FOXDIANA@...

>

> Hi Everyone,

>

> Let me introduce my self to ya'll. My name is Joan, 63 yrs young, married

> for the 3rd time, (widowed the second time, divorced the 1st time). My

> husband is a paraplegic confined to bed now, 20 years my junior. I have full

> care of him but do get away every 2 months for a week. This is doctors

> orders, he he he, love my doctor. I have 4 daughters, 5 grandchildren, 2

> ferrets, and a cockatiel. And I am glad to be alive and healing.

>

> I have high blood pressure, autoimmune hepatitis and cirrhosis. These are

> life challenging diseases to me. I will survive this God willing. I cannot

> take prednisone or Imuran. According to my doctor, the side effects from the

> drugs are not worth the side effects. Soooo, I do what I have to do..

>

> Have any of you read the book " The Liver Cleansing Diet " by Cabot,

> M.D.? A wonderful book that I have found to be helpful. I take all the

> herbs and vitamins she speaks of, I follow the diet to a tee and drink 8

> glasses of water a day (which is the worse part of the program, I don't like

> the taste of water, hehehe). I also eat a package of carrots and a can of

> sardines a day. Both of which I do not like at all...but if it will help me

> stay alive so be it.

>

> I take meds for the high blood pressure, anti-hystamins for the itching, (my

> whole body itches) and water pills. I have gained weight and look pregnant,

> and have people ask me if I am indeed pregnant. I just laugh and tell them

> NOOOOOO, there is just a lot of me too love.. I have liver spots all over,

> does any of this bother me. No, because I am alive, am going to be healed

> and know in my heart that I will be around for a long, long time. And no one

> is more conscious of their looks then I am. I look in the mirror and see a

> stranger looking back at me. Inside I am the same woman, the exterior has

> just changed a lot, LOL.

>

> I am retired from the accounting world. I worked for an organization that

> trained Developmentally Disabled Adults in independent living skills. Very

> rewarding job. I am on AOL 7 years, am addicted to it. It is my salvation on

> the path set before me. I met my soulmate on line, who has Hepatitis C, and

> just starting Interferon this coming week. We support each other.

>

> Well, that is about it. I probably bored you, but thank you for listening.

> Looking forward to meet you all..

>

> Joan

>

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

June 25, 1999

Yes Yoga! I do a series of Yoga moves called " Salutations to the Sun "

Every morning Yes even when I am feeling down and no good for nothing

I love It.... Dixie

S9457@... wrote:

> From: S9457@...

>

> Sue B,

>

> I'm thinking about going to yoga, to " Find some inner peace " . This has been

> a rough year for me. Getting diagnosed, getting through a divorce and trying

> to get my life on track. I never told my Ex about my condition. I just feel

> he'd eventually try to use it against me. He was never really supportive

> during our marriage so I can't see him offering much support now.

>

> Just venting, Have a good weekend. Just being able to hear from the group

> makes me feel that I'm not alone.

>

> Thanks!

>

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

June 26, 1999

Dixie:

I know the feeling of being fat. I have always been overweight but not alot

when I was in high school and about 10 years after but then it started to get

harder to get the fat off. With the medicine, I just have about had it. I

think that I will blow up because I am overweight and under tall. But, I

guess my husband has still cares because he has seen me small and extremely

fat and he is really bed good about it. He is really worried I can tell but

he has aways had a hard time showing feelings. His mother is not a person to

show feelings either so he was never really taught.

Sue AIH

Wisconsin

June 26, 1999

Joan:

Welcome to the group. Everyone here asks and answer questions of any kind

and say anything you want to say.

This is why it is called a support group!!!!

Sue AIH

Wisconsin

June 26, 1999

Hello to all

Joan

You mentioned that your soulmate has Hep C; plus possible

Interferon treatments. I have undergone two studies so far

with interferon + combo treatments. The first round Mar/May 93

interferon fm 3 mil units x 3 weekly, increased to 15 mil units x 3 wkly.

Second round was the combo treatments Dec 97/Nov 98 interferon 3 mil x 3

plus Ribavirin 1000 units x 7 weekly. I'm presently awaiting round three

Jul 12 - which will be Interferon 2B - 3 mil units every day - plus

Ribavirin

1000 units every day. Each trial took my levels from the 300's down to

30's - 40's. But didn't last as long as my doctors and I would have

lliked. It caused me to come out of remission for leukemia (2x). They

are hoping that this time, it may work better. The leukemia is not a

side effect from the treatments, only from radiation exposure - occupational

hazard; that's not supposed to happen in the ideal world. however... A lot

of veterans here that have been through the studies with interferon have

responded to the treatments (me included). It's a start in the right

direction... I just hated feeling like I had the Flu all the time. I felt

that way w/o the meds..It's Hep C --- I got that from blood transfusions

during the vietnam days, and more blood from follow-on operations.

With all the medical problems I have, they have to put shunts in for

the chemo/rad, + plus I had to give myself shots of interferon. I have to

laugh a lot, because I HATE needles. I kid my doctors and nurses

about being the human pin cushion.. You have to take life with a

grain of salt, and have a big sense of humor.. I went from a hospice

environment - and I'm here today. I definately intend to be here tomorrow.

It's one day at a time. Some day s are good, and some days are not

so good. But my worse day is better than having no day at all. And I'm

thankful I'm still here This was to be a short one - SORRY !

Rocco

Re: [ ] Concerned

From: FOXDIANA@...

Hi Everyone,

Let me introduce my self to ya'll. My name is Joan, 63 yrs young, married

for the 3rd time, (widowed the second time, divorced the 1st time). My

husband is a paraplegic confined to bed now, 20 years my junior. I have

full

care of him but do get away every 2 months for a week. This is doctors

orders, he he he, love my doctor. I have 4 daughters, 5 grandchildren, 2

ferrets, and a cockatiel. And I am glad to be alive and healing.

I have high blood pressure, autoimmune hepatitis and cirrhosis. These are

life challenging diseases to me. I will survive this God willing. I cannot

take prednisone or Imuran. According to my doctor, the side effects from

the