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In a message dated 12/15/02 10:01:04 PM Eastern Standard Time, msaire@... writes:

I have never spoken to or met one other single person with this disease!

I am so thankful I ran into your group.

I have a lot of experience with this illness, so maybe I will fit in.

Welcome Marty!

Cheryl

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> Hi!

> My name is Marty and I somehow ran into your support group

on the internet. I am so thankful I ran into your group.

> I have a lot of experience with this illness, so maybe I will fit in.

>

> Hoping to hear from someone, Marty

Marty,

Welcome to the group! I tend to lurk more than post, but I wanted

to welcome you. I have only been diagnosed with AIH for one

year, but I don't think that I could have coped as well as I have

without this group. Bless you for dealing with AIH on your own for

12 years! Please share with us about your experiences.

Glad to have you here.

(in Wyoming)

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Welcome. I am fairly new to this group myself, I don't respond very often to the messages - but I do get alot of reliable information. Fatigue is my biggest problem also.

[ ] New Member

Hi!

My name is Marty and I somehow ran into your support group on the internet.

I have had autoimmune hepatitis for 12 years. I have been on Prednisone since

then, and Imuran for the past 5 years or so. I rarely have flare ups any more

but I have lots of problems with opportunistic infections i.e. herpes, shingles,

thrush, not to mention the side effects of long term Prednisone use i.e. weight gain

hypertension, depression, blood sugar problems, loss of hair, BRUISING (my shins are permanently discolored).

I would say my biggest complaint by far is the fatigue. I hardly ever have a day

that I feel great. I'm always dragging no matter how much sleep I get.

I joined a health club in October, but got Strep Throat a week later, and after 3

courses of antibiotics, I am still sick and unable to even think about exercising.

I'm due for LFT's next week-get them quarterly now.

I only had one biopsy for diagnosis in the beginning, and nothing since.

I have tried many times to go off the Prednisone but the ALT and AST always rise.

I have never spoken to or met one other single person with this disease!

I am so thankful I ran into your group.

I have a lot of experience with this illness, so maybe I will fit in.

Hoping to hear from someone,

Marty

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HI Marty,

I am new to this group as well. I was dx in 2002, but have had elevated liver

enzyme tests for many years. No one was able to figure out what was wrong

with me! I am on Imuron 150mg and Pred 5mg. This combination seems to keep

my levels acceptable . Not normal. tho. This group is a G-d send! I have

learned so much from everyone. Good luck and welcome to you!

Sylvia

a wrote:

Welcome. I am fairly new to this group

myself, I don't respond very often to the messages - but I do get alot of

reliable information. Fatigue is my biggest problem also.

-----

Original Message -----

From:

Martha

Christensen

To:

Sent:

Monday, December 16, 2002 12:44 AM

Subject:

[ ] New Member

Hi!

My name is Marty and I somehow

ran into your support group on the internet.

I have had autoimmune hepatitis

for 12 years. I have been on Prednisone since

then, and Imuran for the past

5 years or so. I rarely have flare ups any more

but I have lots of problems

with opportunistic infections i.e. herpes, shingles,

thrush, not to mention the side

effects of long term Prednisone use i.e. weight gain

hypertension, depression, blood

sugar problems, loss of hair, BRUISING (my shins are permanently discolored).

I would say my biggest complaint

by far is the fatigue. I hardly ever have a day

that I feel great. I'm always

dragging no matter how much sleep I get.

I joined a health club in October,

but got Strep Throat a week later, and after 3

courses of antibiotics, I am

still sick and unable to even think about exercising.

I'm due for LFT's next week-get

them quarterly now.

I only had one biopsy for diagnosis

in the beginning, and nothing since.

I have tried many times to go

off the Prednisone but the ALT and AST always rise.

I have never spoken to or met

one other single person with this disease!

I am so thankful I ran into

your group.

I have a lot of experience with

this illness, so maybe I will fit in.

Hoping to hear from someone,

Marty

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whoops, I meant I was dx in 2000! My biggest complaints are fatigue and memory

issues!!!!!

Sylvia

Sylvia Margolis wrote:

HI Marty,

I am new to this group as well. I was dx in 2002, but have had elevated

liver enzyme tests for many years. No one was able to figure out what was

wrong with me! I am on Imuron 150mg and Pred 5mg. This combination seems

to keep my levels acceptable . Not normal. tho. This group is a G-d send!

I have learned so much from everyone. Good luck and welcome to you!

Sylvia

a wrote:

Welcome. I am fairly new to this group myself, I don't respond very often to the messages - but I do get alot of reliable information. Fatigue is my biggest problem also.

[ ] New Member

Hi!

My name is Marty and I somehow ran into your support group on the internet.

I have had autoimmune hepatitis for 12 years. I have been on Prednisone since

then, and Imuran for the past 5 years or so. I rarely have flare ups any more

but I have lots of problems with opportunistic infections i.e. herpes, shingles,

thrush, not to mention the

side effects of long term Prednisone use i.e. weight gain

hypertension, depression,

blood sugar problems, loss of hair, BRUISING (my shins are permanently

discolored).

I would say my biggest complaint by far is the fatigue. I hardly ever have a day

that I feel great. I'm always dragging no matter how much sleep I get.

I joined a health club in

October, but got Strep Throat a week later, and after 3

courses of antibiotics, I

am still sick and unable to even think about exercising.

I'm due for LFT's next week-get them quarterly now.

I only had one biopsy for

diagnosis in the beginning, and nothing since.

I have tried many times to

go off the Prednisone but the ALT and AST always rise.

I have never spoken to or

met one other single person with this disease!

I am so thankful I ran into your group.

I have a lot of experience

with this illness, so maybe I will fit in.

Hoping to hear from someone,

Marty

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>

> From: Astonlsky@...

> Date: Tue 17/Dec/2002 23:34 GMT

>

> Subject: Re: [ ] New Member

>

> Hi Marty

>

> Welcome! I'm sure you will find great support and advice on here.

>

> (midlands - england)

>

> hi, my name is anita i live in england and have just been diagnosed aih. i am

on steroids and they want me to start chemo in january, can anyone please tell

me what to expect. my doctor says its fatal if i dont repond to treatment. i

just need to chat to people who have this disease as i feel very isolated and

scared. please help

anita

rainbow1953@...

_______________________________________________________________________

Freeserve AnyTime, only £13.99 per month with one month's FREE trial!

For more information visit http://www.freeserve.com/time/ or call free on 0800

970 8890

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>

> From: " lisa m skowron " <lsmaxfax@...>

> Date: Tue 17/Dec/2002 00:59 GMT

> < >

> Subject: RE: [ ] New Member

>

> Dear Marty,

>

> It's good to hear from you. Welcome!

>

>

>

> [ ] New Member

>

> Hi!

> My name is Marty and I somehow ran into your support group on the

> internet.

> I have had autoimmune hepatitis for 12 years. I have been on Prednisone

> since

> then, and Imuran for the past 5 years or so. I rarely have flare ups

> any more

> but I have lots of problems with opportunistic infections i.e. herpes,

> shingles,

> thrush, not to mention the side effects of long term Prednisone use i.e.

> weight gain

> hypertension, depression, blood sugar problems, loss of hair, BRUISING

> (my shins are permanently discolored).

> I would say my biggest complaint by far is the fatigue. I hardly ever

> have a day

> that I feel great. I'm always dragging no matter how much sleep I get.

>

> I joined a health club in October, but got Strep Throat a week later,

> and after 3

> courses of antibiotics, I am still sick and unable to even think about

> exercising.

> I'm due for LFT's next week-get them quarterly now.

> I only had one biopsy for diagnosis in the beginning, and nothing since.

> I have tried many times to go off the Prednisone but the ALT and AST

> always rise.

>

> I have never spoken to or met one other single person with this disease!

> I am so thankful I ran into your group.

> I have a lot of experience with this illness, so maybe I will fit in.

>

> Hoping to hear from someone,

> Marty

>

>

>

>

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were in wyoming are you at I am in Wapiti

Martha Christensen wrote:

in Wyoming:

Thanks for your response. I can't believe the amount of email.

I have the

time to read it right now but I'm sure I will become a "lurker"

as well, at

times. I it sure helpful to be able to compare notes with

others!

Marty

[ ] Re: New Member

> > Hi!

> > My name is Marty and I somehow ran into your support

group

> on the internet. I am so thankful I ran into your group.

> > I have a lot of experience with this illness, so

maybe I will fit in.

> >

> > Hoping to hear from someone, Marty

>

>

> Marty,

>

> Welcome to the group! I tend to lurk more than post, but I wanted

> to welcome you. I have only been diagnosed with AIH for one

> year, but I don't think that I could have coped as well as I

have

> without this group. Bless you for dealing with AIH on your own

for

> 12 years! Please share with us about your experiences.

>

> Glad to have you here.

>

> (in Wyoming)

>

>

>

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In a message dated 12/17/02 6:40:37 PM Eastern Standard Time, rainbow1953@... writes:

hi, my name is anita i live in england and have just been diagnosed aih. i am on steroids and they want me to start chemo in january, can anyone please tell me what to expect. my doctor says its fatal if i dont repond to treatment. i just need to chat to people who have this disease as i feel very isolated and scared. please help

Hi Anita,

Have you had a liver biopsy? Do you have cirrhosis? I have always been told by my doctor that this disease is chronic, not fatal. She told me I will die with it, not from it. Do you have the option of talking to another doctor to see what their take on it is? I can understand your feelings, I felt the same way. I have only had my official diagnosis for 3 weeks. Knowledge is power, and learning all I could about this disease has eased my mind tremendously. This group is a great source of information and support.

Cheryl

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In a message dated 12/17/02 11:37:55 PM Eastern Standard Time, msaire@... writes:

I am from Northern Michigan, USA

How far North Marty? My grandparents are from St Ignace. I went to school at Central Michigan University in the middle of the state.

Cheryl

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> were in wyoming are you at I am in Wapiti

>

Wow, Dave, I can NOT believe that there is another Wyomingite

in the group! What are the odds of that with our small

population?

I am in Riverton (central Wyoming). I see that you live near Cody.

Do you go to Billings to see a specialist or do you go to Casper

or is there a local specialist?

Wyoming's population is so low that we have got to be the token

patients with AIH.

Are you a Wyoming native?

(in Wyoming)

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Debby:

Thanks for the welcome. I was on 5 mg. of Prednisone daily for a long time, but I just increased it to 10mg. a couple days ago because I couldn't recover from persistent ?viral URI. I feel great today! I'll tell my doctor about it next week when I go in. This has worked for me in the past, i.e. increasing my Pred slightly if I get sick and it doesn't clear up right away. I've never gotten below 5 mg. maintenance.

Marty

[ ] New Member

Hi!

My name is Marty and I somehow ran into your support group on the internet.

I have had autoimmune hepatitis for 12 years. I have been on Prednisone since

then, and Imuran for the past 5 years or so. I rarely have flare ups any more

but I have lots of problems with opportunistic infections i.e. herpes, shingles,

thrush, not to mention the side effects of long term Prednisone use i.e. weight gain

hypertension, depression, blood sugar problems, loss of hair, BRUISING (my shins are permanently discolored).

I would say my biggest complaint by far is the fatigue. I hardly ever have a day

that I feel great. I'm always dragging no matter how much sleep I get.

I joined a health club in October, but got Strep Throat a week later, and after 3

courses of antibiotics, I am still sick and unable to even think about exercising.

I'm due for LFT's next week-get them quarterly now.

I only had one biopsy for diagnosis in the beginning, and nothing since.

I have tried many times to go off the Prednisone but the ALT and AST always rise.

I have never spoken to or met one other single person with this disease!

I am so thankful I ran into your group.

I have a lot of experience with this illness, so maybe I will fit in.

Hoping to hear from someone,

Marty

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Cheryl:

Thanks for the response. Looking forward to talking with you....

Re: [ ] New Member

In a message dated 12/15/02 10:01:04 PM Eastern Standard Time, msaire@... writes:

I have never spoken to or met one other single person with this disease!I am so thankful I ran into your group.I have a lot of experience with this illness, so maybe I will fit in. Welcome Marty!Cheryl

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in Wyoming:

Thanks for your response. I can't believe the amount of email. I have the

time to read it right now but I'm sure I will become a " lurker " as well, at

times. I it sure helpful to be able to compare notes with others!

Marty

[ ] Re: New Member

> > Hi!

> > My name is Marty and I somehow ran into your support group

> on the internet. I am so thankful I ran into your group.

> > I have a lot of experience with this illness, so maybe I will fit in.

> >

> > Hoping to hear from someone, Marty

>

>

> Marty,

>

> Welcome to the group! I tend to lurk more than post, but I wanted

> to welcome you. I have only been diagnosed with AIH for one

> year, but I don't think that I could have coped as well as I have

> without this group. Bless you for dealing with AIH on your own for

> 12 years! Please share with us about your experiences.

>

> Glad to have you here.

>

> (in Wyoming)

>

>

>

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Sylvia:

I also had elevated liver enzymes for at least 5 years prior to diagnosis.

Marty

[ ] New Member

Hi!

My name is Marty and I somehow ran into your support group on the internet.

I have had autoimmune hepatitis for 12 years. I have been on Prednisone since

then, and Imuran for the past 5 years or so. I rarely have flare ups any more

but I have lots of problems with opportunistic infections i.e. herpes, shingles,

thrush, not to mention the side effects of long term Prednisone use i.e. weight gain

hypertension, depression, blood sugar problems, loss of hair, BRUISING (my shins are permanently discolored).

I would say my biggest complaint by far is the fatigue. I hardly ever have a day

that I feel great. I'm always dragging no matter how much sleep I get.

I joined a health club in October, but got Strep Throat a week later, and after 3

courses of antibiotics, I am still sick and unable to even think about exercising.

I'm due for LFT's next week-get them quarterly now.

I only had one biopsy for diagnosis in the beginning, and nothing since.

I have tried many times to go off the Prednisone but the ALT and AST always rise.

I have never spoken to or met one other single person with this disease!

I am so thankful I ran into your group.

I have a lot of experience with this illness, so maybe I will fit in.

Hoping to hear from someone,

Marty

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Hey Dave......I am out for the holiday season....are you? Hope so! I don't know about you, but I NEED the rest. I think I have a couple of days left of sick leave.....dang....haven't been sick from colds or stuff....just from the meds!

Debby

[ ] Re: New Member > > Hi! > > My name is Marty and I somehow ran into your support group > on the internet. I am so thankful I ran into your group. > > I have a lot of experience with this illness, so maybe I will fit in. > > > > Hoping to hear from someone, Marty > > > Marty, > > Welcome to the group! I tend to lurk more than post, but I wanted > to welcome you. I have only been diagnosed with AIH for one > year, but I don't think that I could have coped as well as I have > without this group. Bless you for dealing with AIH on your own for > 12 years! Please share with us about your experiences. > > Glad to have you here. > > (in Wyoming) > > >

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Hi :

I am from Northern Michigan, USA

So great to be hearing from so many folks with the same illness.

I can't believe I went all those years without talking with anyone!!!

I'm so glad to be here.

Marty

Re: [ ] New Member

> >

> > Hi Marty

> >

> > Welcome! I'm sure you will find great support and advice on here.

> >

> > (midlands - england)

> >

> > hi, my name is anita i live in england and have just been diagnosed aih.

i am on steroids and they want me to start chemo in january, can anyone

please tell me what to expect. my doctor says its fatal if i dont repond to

treatment. i just need to chat to people who have this disease as i feel

very isolated and scared. please help

>

> anita

>

> rainbow1953@...

>

>

> _______________________________________________________________________

> Freeserve AnyTime, only £13.99 per month with one month's FREE trial!

> For more information visit http://www.freeserve.com/time/ or call free on

0800 970 8890

>

>

>

>

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Thanks

[ ] New Member

> >

> > Hi!

> > My name is Marty and I somehow ran into your support group on the

> > internet.

> > I have had autoimmune hepatitis for 12 years. I have been on Prednisone

> > since

> > then, and Imuran for the past 5 years or so. I rarely have flare ups

> > any more

> > but I have lots of problems with opportunistic infections i.e. herpes,

> > shingles,

> > thrush, not to mention the side effects of long term Prednisone use i.e.

> > weight gain

> > hypertension, depression, blood sugar problems, loss of hair, BRUISING

> > (my shins are permanently discolored).

> > I would say my biggest complaint by far is the fatigue. I hardly ever

> > have a day

> > that I feel great. I'm always dragging no matter how much sleep I get.

> >

> > I joined a health club in October, but got Strep Throat a week later,

> > and after 3

> > courses of antibiotics, I am still sick and unable to even think about

> > exercising.

> > I'm due for LFT's next week-get them quarterly now.

> > I only had one biopsy for diagnosis in the beginning, and nothing since.

> > I have tried many times to go off the Prednisone but the ALT and AST

> > always rise.

> >

> > I have never spoken to or met one other single person with this disease!

> > I am so thankful I ran into your group.

> > I have a lot of experience with this illness, so maybe I will fit in.

> >

> > Hoping to hear from someone,

> > Marty

> >

> >

> >

> >

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Cheryl:

I am from Traverse City, the Cherry Capital of the world!

Marty

Re: [ ] New Member

In a message dated 12/17/02 11:37:55 PM Eastern Standard Time, msaire@... writes:

I am from Northern Michigan, USAHow far North Marty? My grandparents are from St Ignace. I went to school at Central Michigan University in the middle of the state.Cheryl

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Welcome Amy. Sorry you had so much problem with your biopsy. You will

learn much here.

Debby

AIH 7/01

[ ] New Member

> Hi all just wanted to say hello. I have just been diagnosed with

> AIH and started on Prednisone last week. My biopsy went awful!!! I

> am a nurse and I wasn't even prepared for it! I had significant

> pain almost a week after the biopsy. I even had to go to the ER.

> They had problems with my biopsy due to the fibrosis and could only

> get one sample. I was also in the procedure room for 2 hours. They

> have concluded that I have Stage 3 fibrosis but I am not so sure

> about how accurate that was. Has your biopsies gone awful also. Do

> they do conscious sedation on you and do you have many problems

> after? They would not allow conscious sedation but I don't think I

> can do it again if not.

>

> I have many more questions that just cannot be answered but by

> people who have experienced it.

>

> I look forward to getting to know you all.

>

> Amy

>

>

>

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Hi Amy, Im Debbie, Im in the UK Im also a nurse with AIH, I understand your

fatigue problems combined with working full time, unfortunately I don't have

a magical answer. I was diagnosed over 20 years ago, managed to complete my

nurse training and generally have worked ever since, apart from one or two

'blips'.

Two years ago things got so bad that I was liver transplanted, I feel so

amazingly different, there's no stopping me now, there are not enough hours

in the day for me, although there are times when tiredness hits me but this

is occasional rather than daily.

This is a great place for information, I wish Id found it years ago! I wish

you well with everything,

Best wishes Debbie

Ps I think there are a couple of other debbie's here.

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Amy,

I am so sorry to hear of your poor experience with the biopsy. How was it

performed? I work with cats, and do an average of 1-2 ultrasound guided

fine-needle asperates per week. We monitor the cats for several hours to

days later, and have not seen any side effects (this included bleeding with

moderately elevated PTT's and ACT's...ie we haven't seen this complication.

:-) ) Perhaps it was just the technique and technition diong the

procedure. I hope you are feeeling better now.

Kat

[ ] New Member

> Hi all just wanted to say hello. I have just been diagnosed with

> AIH and started on Prednisone last week. My biopsy went awful!!! I

> am a nurse and I wasn't even prepared for it! I had significant

> pain almost a week after the biopsy. I even had to go to the ER.

> They had problems with my biopsy due to the fibrosis and could only

> get one sample. I was also in the procedure room for 2 hours. They

> have concluded that I have Stage 3 fibrosis but I am not so sure

> about how accurate that was. Has your biopsies gone awful also. Do

> they do conscious sedation on you and do you have many problems

> after? They would not allow conscious sedation but I don't think I

> can do it again if not.

>

> I have many more questions that just cannot be answered but by

> people who have experienced it.

>

> I look forward to getting to know you all.

>

> Amy

>

>

>

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  • 2 weeks later...

>Hello, just found the group by accident; I am a Chronic Pain sufferer

>caused by degenerative disk problems in Cervical spine have had two

>spinal fusions plus some added wires in cervical spine to hold it

>together. I had these 2 fusions in 1993 and continued to work untill

>April 2001 and had to retire because pain became to great to continue.

>Home State TN. age 59.>>

LOL Well, Jerry, welcome aboard and glad you found us by accident! ;) We

are an odd bunch, but we do all care about each other and the endless days

of pain we all seem to have. I have lower lumbar probs after a fusion in

3/02, second surgery to fix Dr screw up 4/02. Nerve damage, muscle loss

yadda yadda yadda <G> I still muddle thru my own business, but hey, I can

set on my butt all day if I want to LOL

So.....do you think you have another injury, or is the original one that's

just never gotten better? I tell ya, I just don't know that I have a

whole lot of trust/faith in modern medicine. From what the new Neuro has

to say, the best I can hope for is to deal with the pain caused by the

nerve damage. I still have another surgery to look forward to, to get the

right side of my hardware out.....but I do feel better knowing this NS is

doing it as opposed to the OS! LOLOL If it were him doing it, I'd leave

it in there for eternity! :) Glad you joined us!

Ask me about my new MSM lotion for aches/pains!

http://www.scentsappeal.net

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