Re: finally glad to find a place for suppport

[Guest guest]

Hi , My name is Jennie and I was dx with AIH May of 2002. I was finally dx

after several test and a final biopsy. My main complaint was extreme joint

pain. I now know when my levels are rising as I will get joint pain the longer

I wait to get on the predisone the worse the pain is. I am going on 4 years now

and I still have blood work once a month. I will be off the predisone for a

couple months then the pain and fatigue come back the blood work shows levels up

and then back on the predisone. Since Oct I have been on a maintanence of 5 mg

of pred with my 175 of immuran. We decided to stay on a low predisone and see

if it is enough to keep my levels down permanently....or for at least an

extended amount of time. The down side of the predisone is I have gain alot of

weight with it. That is about the only side effect I have at this time. I will

take that not to have the pain I was in. Please don't wait until March for

blood work call the doctor and get it done earlier. My understanding any

inflammation is more damage to the liver. Take care let us know what you find

out and how you are doing. We are all hanging in there together. Jennie AIH 02

[ ] finally glad to find a place for suppport

Hi everyone, My name is and I have had AIH for on year now. Ive

had two biopsys in the past year. First one came back a grade four

level three. I was placed on 50mg prednisone and 50mg imuran. I sure

did hate the prednisone, it does weird stuff to the body. My second

biopsy came back grade 2 level 2, which is much improved. I am now

off the prednisone and feel like i'm about to die. My joints hurt,

like no pain I have ever felt. I still suffer from fatigue, and the

doctor thinks I always will. Over the last three months my liver

levels continued to rise, not alot, so thats why we did the second

biopsy. I go back in March 2006 for blood work and to see where I am

at. I know my liver is getting swolen again due to the pain on my

right side. The doctor feels it is from the biopsy and wants to

monitor it.

PS would love to chat with anyone

[Guest guest]

You want to know about weight gain, I can be the good year blimp at the

super bowl or a bouey in the mighty Mississippi. I have to laugh and joke

about it cause it is funny. I have several side effects from the prednisone

weight, hot flashes, fungus on my skin, mood swings, hand shakes where I

had to use a sippy cup, and nervousness, no sleep. My body does not react

well to medications, and I am allergic to more than I can take. Please keep

in touch

-- [ ] finally glad to find a place for suppport

Hi everyone, My name is and I have had AIH for on year now. Ive

had two biopsys in the past year. First one came back a grade four

level three. I was placed on 50mg prednisone and 50mg imuran. I sure

did hate the prednisone, it does weird stuff to the body. My second

biopsy came back grade 2 level 2, which is much improved. I am now

off the prednisone and feel like i'm about to die. My joints hurt,

like no pain I have ever felt. I still suffer from fatigue, and the

doctor thinks I always will. Over the last three months my liver

levels continued to rise, not alot, so thats why we did the second

biopsy. I go back in March 2006 for blood work and to see where I am

at. I know my liver is getting swolen again due to the pain on my

right side. The doctor feels it is from the biopsy and wants to

monitor it.

PS would love to chat with anyone

[Guest guest]

Hi I am behind on my emails but let me welcome you to our group.

I have had AIH for almost 10 yrs adn I am nowo off the prednisone. I also

have hoint pain and other paoins. Sorry my spelling is off.

I am on 100mg off imuran and a bunch of other meds. Right now due to a lack

of insurance I am being weaned off all meds.

I live in WV and have a jusband of 25yrs and 2 sons 23 & 19.

I would love to talk to you or chat anytine

WELCOME

the WV hilbilly

[Guest guest]

Dear ,

This is my first time to email anybody in this support group. I

have only been diagnosed since September 19, 2006. As you probably

were, I feel confused & overwhelmed to say the least. Just to know

that this extremely rare liver disease & I can now talk to & share

with people like you. My liver biopsy confirms I have Primary

Biliary Cirrohis & Autoimmune Hepatitis (OVERRLAP)- Grade 4 - Stage 2

I really don't know how long I've had this because I've had all the

symptoms for quite a long time. I actually went to see my primary

care physcian for a well-woman's check-up, & told the doctor the toe

nail fungus I had over 2 year's ago was flaring up again. In order

to prescribe Lamisil, a specific blood work-up was done because

Lamisil should not be taken if you have anything going on in your

liver. All the liver enzymes were extremely high - for instance on

just the alkaline phosphatase was 2022 & the normal range is from 30-

132! Sorry this email is so long & drawn out, I am just having a

really hard time condensing into words what this liver disease is

doing, ugh. It would be nice to chat with you, or anyone who

understands this liver disease. I hope this finds you doing better.

Sincerely,

- In , " maxranggizmo " <twistipher@...>

wrote:

>

> Hi everyone, My name is and I have had AIH for on year now.

Ive

> had two biopsys in the past year. First one came back a grade

four

> level three. I was placed on 50mg prednisone and 50mg imuran. I

sure

> did hate the prednisone, it does weird stuff to the body. My

second

> biopsy came back grade 2 level 2, which is much improved. I am

now

> off the prednisone and feel like i'm about to die. My joints

hurt,

> like no pain I have ever felt. I still suffer from fatigue, and

the

> doctor thinks I always will. Over the last three months my liver

> levels continued to rise, not alot, so thats why we did the second

> biopsy. I go back in March 2006 for blood work and to see where I

am

> at. I know my liver is getting swolen again due to the pain on my

> right side. The doctor feels it is from the biopsy and wants to

> monitor it.

>

> PS would love to chat with anyone

>

>

[Guest guest]

[ ] Re: finally glad to find a place for suppport

> Dear ,

> This is my first time to email anybody in this support group. I

> have only been diagnosed since September 19, 2006. As you probably

> were, I feel confused & overwhelmed to say the least. Just to know

> that this extremely rare liver disease & I can now talk to & share

> with people like you. My liver biopsy confirms I have Primary

> Biliary Cirrohis & Autoimmune Hepatitis (OVERRLAP)- Grade 4 - Stage 2

> I really don't know how long I've had this because I've had all the

> symptoms for quite a long time. I actually went to see my primary

> care physcian for a well-woman's check-up, & told the doctor the toe

> nail fungus I had over 2 year's ago was flaring up again. In order

> to prescribe Lamisil, a specific blood work-up was done because

> Lamisil should not be taken if you have anything going on in your

> liver. All the liver enzymes were extremely high - for instance on

> just the alkaline phosphatase was 2022 & the normal range is from 30-

> 132! Sorry this email is so long & drawn out, I am just having a

> really hard time condensing into words what this liver disease is

> doing, ugh. It would be nice to chat with you, or anyone who

> understands this liver disease. I hope this finds you doing better.

> Sincerely,

>

>

> - In , " maxranggizmo " <twistipher@...>

> wrote:

>>

>> Hi everyone, My name is and I have had AIH for on year now.

> Ive

>> had two biopsys in the past year. First one came back a grade

> four

>> level three. I was placed on 50mg prednisone and 50mg imuran. I

> sure

>> did hate the prednisone, it does weird stuff to the body. My

> second

>> biopsy came back grade 2 level 2, which is much improved. I am

> now

>> off the prednisone and feel like i'm about to die. My joints

> hurt,

>> like no pain I have ever felt. I still suffer from fatigue, and

> the

>> doctor thinks I always will. Over the last three months my liver

>> levels continued to rise, not alot, so thats why we did the second

>> biopsy. I go back in March 2006 for blood work and to see where I

> am

>> at. I know my liver is getting swolen again due to the pain on my

>> right side. The doctor feels it is from the biopsy and wants to

>> monitor it.

>>

>> PS would love to chat with anyone

>>

>>

> Oh my word, it's so alright to share, and share some more. I've been

> sharing my success story for all of 16 wonderful years now. I was

> diagnosed so long ago, Non A, Non B, autoimmine hep, cuz C wasn't Hep C

> back when. I found myself in Support Groups, Green Hospital, in La Jolla,

> CA, to LA, San Bernadino County. I'm what eventually happens when Hep C is

> final stage?

A UCLA transplant in 1990. The other day, a woman was surprised, she didn't

think they did transplants that long ago? I just started chattting at this

Support Group last week. I haven't shut up since!!LOL I think I'm a talker!!

I go on so, to a fault, my fault. " mortormouth " Thank goodness it's email!

Because I'm having lots of denture work done on Wednesday, complete upper

dentures, extractions, lots, etc. " happy smile again " it's worth the

discomfort. After all these years, I've worn out my smile!! I'm one of many

success stories on this Support Group Chat room. Thanks for sharing with the

rest of us too.

Motormouth Yolanda

[Guest guest]

There are many people on this site to chat with regarding your illness &

concerns. I have PBC myself, but have learned about AIH through people in this

group & a

little research on my own. I've kept all of my labs. In 1996 my ALK PHOS was

153 (38-126). Now it is 800 (with the normal range being the same) I didn't have

any major

complaints for many years.Then, my energy level decreased dramatically and

began to stay home (still miss my job some of the time). My lastest problem will

probably lead me to be evaluated by the transplant team; when I see the gastro

in January. I

have osteoporosis in my hip & osteopenia in my spine and now cracked a rib

while

scrubbing the bathroom. My itching has increased so my nurse coordinator has

me taking the atarax more frequently than I had been.

A rib fracture is no fun, nor is feeling " gorked " on these meds but the

possible outcome of these new problems will make it worth it,

Yolanda &

You will learn that you can deal with what's been dealt. And that there are

good & not

so good days. But you accept things & over time learn more and it will indeed

over-

come this hurdle.

yolanda and ed <ez.ed@...> wrote:

[ ] Re: finally glad to find a place for suppport

> Dear ,

> This is my first time to email anybody in this support group. I

> have only been diagnosed since September 19, 2006. As you probably

> were, I feel confused & overwhelmed to say the least. Just to know

> that this extremely rare liver disease & I can now talk to & share

> with people like you. My liver biopsy confirms I have Primary

> Biliary Cirrohis & Autoimmune Hepatitis (OVERRLAP)- Grade 4 - Stage 2

> I really don't know how long I've had this because I've had all the

> symptoms for quite a long time. I actually went to see my primary

> care physcian for a well-woman's check-up, & told the doctor the toe

> nail fungus I had over 2 year's ago was flaring up again. In order

> to prescribe Lamisil, a specific blood work-up was done because

> Lamisil should not be taken if you have anything going on in your

> liver. All the liver enzymes were extremely high - for instance on

> just the alkaline phosphatase was 2022 & the normal range is from 30-

> 132! Sorry this email is so long & drawn out, I am just having a

> really hard time condensing into words what this liver disease is

> doing, ugh. It would be nice to chat with you, or anyone who

> understands this liver disease. I hope this finds you doing better.

> Sincerely,

>

>

> - In , " maxranggizmo " <twistipher@...>

> wrote:

>>

>> Hi everyone, My name is and I have had AIH for on year now.

> Ive

>> had two biopsys in the past year. First one came back a grade

> four

>> level three. I was placed on 50mg prednisone and 50mg imuran. I

> sure

>> did hate the prednisone, it does weird stuff to the body. My

> second

>> biopsy came back grade 2 level 2, which is much improved. I am

> now

>> off the prednisone and feel like i'm about to die. My joints

> hurt,

>> like no pain I have ever felt. I still suffer from fatigue, and

> the

>> doctor thinks I always will. Over the last three months my liver

>> levels continued to rise, not alot, so thats why we did the second

>> biopsy. I go back in March 2006 for blood work and to see where I

> am

>> at. I know my liver is getting swolen again due to the pain on my

>> right side. The doctor feels it is from the biopsy and wants to

>> monitor it.

>>

>> PS would love to chat with anyone

>>

>>

> Oh my word, it's so alright to share, and share some more. I've been

> sharing my success story for all of 16 wonderful years now. I was

> diagnosed so long ago, Non A, Non B, autoimmine hep, cuz C wasn't Hep C

> back when. I found myself in Support Groups, Green Hospital, in La Jolla,

> CA, to LA, San Bernadino County. I'm what eventually happens when Hep C is

> final stage?

A UCLA transplant in 1990. The other day, a woman was surprised, she didn't

think they did transplants that long ago? I just started chattting at this

Support Group last week. I haven't shut up since!!LOL I think I'm a talker!!

I go on so, to a fault, my fault. " mortormouth " Thank goodness it's email!

Because I'm having lots of denture work done on Wednesday, complete upper

dentures, extractions, lots, etc. " happy smile again " it's worth the

discomfort. After all these years, I've worn out my smile!! I'm one of many

success stories on this Support Group Chat room. Thanks for sharing with the

rest of us too.

Motormouth Yolanda

[Guest guest]

-

Dear and NAtalie,

You are probably at the worst part of your emotional swing. new

diagnosis and stuggling to stabelize is a hard road to follow. But be

aware that many on this and other liver disease sites have gone

through this process. It is NOT a hopeless road you are following.

Courage, patience and good sense of humor will do wonders. Also

Knowledge. Read everything you can, come and visit often ( join the

PBC site PBC_Digest ) and do " lurk " a lot. The

folks on this and the other sites are all very supportive, and a lot

of them are very knowledgable. But you have to be your own advocate.

If you feel you are not getting proper care or not getting better do

seek a second opinion. Depending on where you are, these folks will

recomend great clinics and even specific doctors.

-- In , " natbtran " <john@...> wrote:

>

> Dear ,

> This is my first time to email anybody in this support group. I

> have only been diagnosed since September 19, 2006. As you probably

> were, I feel confused & overwhelmed to say the least. Just to know

> that this extremely rare liver disease & I can now talk to & share

> with people like you. My liver biopsy confirms I have Primary

> Biliary Cirrohis & Autoimmune Hepatitis (OVERRLAP)- Grade 4 - Stage 2

> I really don't know how long I've had this because I've had all the

> symptoms for quite a long time. I actually went to see my primary

> care physcian for a well-woman's check-up, & told the doctor the toe

> nail fungus I had over 2 year's ago was flaring up again. In order

> to prescribe Lamisil, a specific blood work-up was done because

> Lamisil should not be taken if you have anything going on in your

> liver. All the liver enzymes were extremely high - for instance on

> just the alkaline phosphatase was 2022 & the normal range is from 30-

> 132! Sorry this email is so long & drawn out, I am just having a

> really hard time condensing into words what this liver disease is

> doing, ugh. It would be nice to chat with you, or anyone who

> understands this liver disease. I hope this finds you doing better.

> Sincerely,

>

>

> - In , " maxranggizmo " <twistipher@>

> wrote:

> >

> > Hi everyone, My name is and I have had AIH for on year now.

> Ive

> > had two biopsys in the past year. First one came back a grade

> four

> > level three. I was placed on 50mg prednisone and 50mg imuran. I

> sure

> > did hate the prednisone, it does weird stuff to the body. My

> second

> > biopsy came back grade 2 level 2, which is much improved. I am

> now

> > off the prednisone and feel like i'm about to die. My joints

> hurt,

> > like no pain I have ever felt. I still suffer from fatigue, and

> the

> > doctor thinks I always will. Over the last three months my liver

> > levels continued to rise, not alot, so thats why we did the second

> > biopsy. I go back in March 2006 for blood work and to see where I

> am

> > at. I know my liver is getting swolen again due to the pain on my

> > right side. The doctor feels it is from the biopsy and wants to

> > monitor it.

> >

> > PS would love to chat with anyone

> >

> >

>

[Guest guest]

This is a really good group & you'll find that everyone is very helpful. I'd say

that there are far more people with AIH and some of us with PBC. Many have PBC

w/ AIH over-lap. Ask questions & someone will always be able to answer. I've

learned alot just by

reading the other posts. You need to find a good gastroenterologist or

hepatoligist in your area. Did your primary care recommend someone? Just ask

through this chat line and you're sure to find someone with a recommendation for

the area that you live

in.

Best of luck,

yolanda and ed <ez.ed@...> wrote:

[ ] Re: finally glad to find a place for suppport

> Dear ,

> This is my first time to email anybody in this support group. I

> have only been diagnosed since September 19, 2006. As you probably

> were, I feel confused & overwhelmed to say the least. Just to know

> that this extremely rare liver disease & I can now talk to & share

> with people like you. My liver biopsy confirms I have Primary

> Biliary Cirrohis & Autoimmune Hepatitis (OVERRLAP)- Grade 4 - Stage 2

> I really don't know how long I've had this because I've had all the

> symptoms for quite a long time. I actually went to see my primary

> care physcian for a well-woman's check-up, & told the doctor the toe

> nail fungus I had over 2 year's ago was flaring up again. In order

> to prescribe Lamisil, a specific blood work-up was done because

> Lamisil should not be taken if you have anything going on in your

> liver. All the liver enzymes were extremely high - for instance on

> just the alkaline phosphatase was 2022 & the normal range is from 30-

> 132! Sorry this email is so long & drawn out, I am just having a

> really hard time condensing into words what this liver disease is

> doing, ugh. It would be nice to chat with you, or anyone who

> understands this liver disease. I hope this finds you doing better.

> Sincerely,

>

>

> - In , " maxranggizmo " <twistipher@...>

> wrote:

>>

>> Hi everyone, My name is and I have had AIH for on year now.

> Ive

>> had two biopsys in the past year. First one came back a grade

> four

>> level three. I was placed on 50mg prednisone and 50mg imuran. I

> sure

>> did hate the prednisone, it does weird stuff to the body. My

> second

>> biopsy came back grade 2 level 2, which is much improved. I am

> now

>> off the prednisone and feel like i'm about to die. My joints

> hurt,

>> like no pain I have ever felt. I still suffer from fatigue, and

> the

>> doctor thinks I always will. Over the last three months my liver

>> levels continued to rise, not alot, so thats why we did the second

>> biopsy. I go back in March 2006 for blood work and to see where I

> am

>> at. I know my liver is getting swolen again due to the pain on my

>> right side. The doctor feels it is from the biopsy and wants to

>> monitor it.

>>

>> PS would love to chat with anyone

>>

>>

> Oh my word, it's so alright to share, and share some more. I've been

> sharing my success story for all of 16 wonderful years now. I was

> diagnosed so long ago, Non A, Non B, autoimmine hep, cuz C wasn't Hep C

> back when. I found myself in Support Groups, Green Hospital, in La Jolla,

> CA, to LA, San Bernadino County. I'm what eventually happens when Hep C is

> final stage?

A UCLA transplant in 1990. The other day, a woman was surprised, she didn't

think they did transplants that long ago? I just started chattting at this

Support Group last week. I haven't shut up since!!LOL I think I'm a talker!!

I go on so, to a fault, my fault. " mortormouth " Thank goodness it's email!

Because I'm having lots of denture work done on Wednesday, complete upper

dentures, extractions, lots, etc. " happy smile again " it's worth the

discomfort. After all these years, I've worn out my smile!! I'm one of many

success stories on this Support Group Chat room. Thanks for sharing with the

rest of us too.

Motormouth Yolanda