Liver biopsy

[Guest guest]

>From: flatcat9@... >Reply- > >Subject: Re: [ ] liver biopsy >Date: Tue, 2 Oct 2001 21:25:22 EDT > >In a message dated 10/2/01 4:58:50 PM Pacific Daylight Time, >jaknjills@... writes: > > > > hi everyone, i`m new to this site, and was diagnosed with auto immune > > hep over two years ago. Doctors didn`t get a decent biopsy, but said > > they didn`t want to put me through another one. About a year ago they > > tried taking me of steroids for a couple of months, in this time i > > went down rapidly and had to go back on a high dose of prednisolone. > > Does anyone one know if this indicated the severity of disease or > > liver damage. Do you think i should ask for another biopsy? I havn`t > > been well for along time, and still feel pretty ill even on steroids, > > but feel the doctors don`t want to be bothered with my other > > > >Welcome, Jacqui. This is a good place to find information or just to talk. >I hope some of the group will have suggestions for you. Are you taking >Imuran (or perhaps CellCept) along with the Prednisone? What are the other >symptoms that are bothering you? Are you taking calcium supplements to >prevent bone loss? >Harper (AIH 5/00) Hello harper, thanks for the welcome. I`m not on anything but steroids as i could not tolarate imuran. They tried me on it twice. Each time it made me so sick. Long before being diagnosed with auto immune hep i found that i had become allergic to many things.My whole body aches, my skin gets itchy and irritated. My eyes feel tired. I just feel really ill. The doctors don`t seem to think any of this is related.I`m not sure exactly when the hepatitus started but about six years ago, i started being sick alot, feeling dizzy, joints swelling, fatigued. Are these symptoms of hep. My moods seem to have gone crazy as well.I feel when i approach doctors about all these things thaythink i`m some hyperchondriac, but to me its turned my world upside down.Sorry its long and depressing.God blessGet your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Hi.

My name is Carl, I to am AIH diagnosed. I read all of you good folks not being able to tolerate Imuran. I too could not tolerate Imuran, so my GI doctor put me on Mercaptopurine MP6. I am able to tolerate this medication and my LFT are close to normal. Ask your physician about this medication. I still am plauged with fatigue. My phys think I should see a shrink. I was very active before I was diagnosed with AIH. Any comment about fatigue.

Hang in there brothers and sisters

Love Carl

>From: flatcat9@... >Reply- > >Subject: Re: [ ] liver biopsy >Date: Wed, 3 Oct 2001 20:59:14 EDT > >In a message dated 10/3/01 5:30:34 PM Pacific Daylight Time, >jaknjills@... writes: > > > > Hello harper, thanks for the welcome. I`m not on anything but steroids as i > > could not tolarate imuran. They tried me on it twice. Each time it made me > > so sick. Long before being diagnosed with auto immune hep i found that i > > had become allergic to many things.My whole body aches, my skin gets itchy > > and irritated. My eyes feel tired. I just feel really ill. The doctors > > don`t seem to think any of this is related.I`m not sure exactly when the > > hepatitus started but about six years ago, i started being sick alot, > > feeling dizzy, joints swelling, fatigued. Are these symptoms of hep. My > > moods seem to have gone crazy as well.I feel when i approach doctors about > > all these things thaythink i`m some hyperchondriac, but to me its turned my > > > >I'm very sorry you're feeling so bad. Has your doctor suggested CellCept in >place of Imuran? Has anyone discussed the possibility of Chronic Fatigue >Syndrome? Best wishes. >Harper Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Hi thanks for the response. I havn`t been offered anything else yet, and no no one has mentioned chronic fatique. Can this cause these symptoms. Do you think i should see a hepatologist rather than my gastro doctor.Could you tell me what your symptoms were before being diagnosed, and do you feel much better now. Do you cope with full time work> I can`t even plan days ahead, i`m more ill than well. Do you get depressed. Sorry for all the questions. God bless jaqui

>From: flatcat9@... >Reply- > >Subject: Re: [ ] liver biopsy >Date: Wed, 3 Oct 2001 20:59:14 EDT > >In a message dated 10/3/01 5:30:34 PM Pacific Daylight Time, >jaknjills@... writes: > > > > Hello harper, thanks for the welcome. I`m not on anything but steroids as i > > could not tolarate imuran. They tried me on it twice. Each time it made me > > so sick. Long before being diagnosed with auto immune hep i found that i > > had become allergic to many things.My whole body aches, my skin gets itchy > > and irritated. My eyes feel tired. I just feel really ill. The doctors > > don`t seem to think any of this is related.I`m not sure exactly when the > > hepatitus started but about six years ago, i started being sick alot, > > feeling dizzy, joints swelling, fatigued. Are these symptoms of hep. My > > moods seem to have gone crazy as well.I feel when i approach doctors about > > all these things thaythink i`m some hyperchondriac, but to me its turned my > > > >I'm very sorry you're feeling so bad. Has your doctor suggested CellCept in >place of Imuran? Has anyone discussed the possibility of Chronic Fatigue >Syndrome? Best wishes. >Harper Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

In a message dated 10/5/01 11:53:48 AM Pacific Daylight Time, bonsfla@... writes:

Went to the doctor yesterday and gained 5 more lbs.

Golly, I don't want to visit the doctor if it makes me gain five pounds! Glad you warned me!

Harper

[Guest guest]

Hi,

My Dad (87) just had the biopsy on Tuesday. I took him in at 7am....they did the biopsy at 8am & he was home at 2pm & I couldn't keep him down! Good Luck & don't let the doubter's get you down!

JudieV@...

[Guest guest]

I know the feeling. we recently moved to Fla. & thank "you know who" for all the airconditioning. My Dad has been down here for 6 years..he lost about 45 lbs. I'm only here since Feb........ & of course wanted the 90+ pounds I've gained(over the 7 years I've been sick) to be off by now....NUTS! but I never give up hope!

Judie

[Guest guest]

I too have the symptoms that you described..going through a crying spell this

morning as a matter of fact. Then add the trauma of what is going on in the

states and bang...went for more blood work today and after 5 sticks they finally

got it. After this I will know if I have to go for the liver biopsy. After years

of people thinking I was just looking for sympathy , I finally have everyones

attention. Though I am not at end stage,it is a rough road. Was told now I have

Hep C and the tests are to see if I kicked it or still have the viral.If I

kicked it I will be back to square 1 as far as what is causing my difficulty.The

stress from the bloodwork has had me in tears for most of the day.

Hugs to all

Bonnie

Re: [ ] liver biopsy

> <DIV></DIV>>Date: Wed, 3 Oct 2001 20:59:14 EDT

> <DIV></DIV>>

> <DIV></DIV>>In a message dated 10/3/01 5:30:34 PM Pacific Daylight Time,

> <DIV></DIV>>jaknjills@... writes:

> <DIV></DIV>>

> <DIV></DIV>>

> <DIV></DIV>> > Hello harper, thanks for the welcome. I`m not on anything but

steroids as i

> <DIV></DIV>> > could not tolarate imuran. They tried me on it twice. Each time

it made me

> <DIV></DIV>> > so sick. Long before being diagnosed with auto immune hep i

found that i

> <DIV></DIV>> > had become allergic to many things.My whole body aches, my skin

gets itchy

> <DIV></DIV>> > and irritated. My eyes feel tired. I just feel really ill. The

doctors

> <DIV></DIV>> > don`t seem to think any of this is related.I`m not sure exactly

when the

> <DIV></DIV>> > hepatitus started but about six years ago, i started being sick

alot,

> <DIV></DIV>> > feeling dizzy, joints swelling, fatigued. Are these symptoms of

hep. My

> <DIV></DIV>> > moods seem to have gone crazy as well.I feel when i approach

doctors about

> <DIV></DIV>> > all these things thaythink i`m some hyperchondriac, but to me

its turned my

> <DIV></DIV>> >

> <DIV></DIV>>

> <DIV></DIV>>I'm very sorry you're feeling so bad. Has your doctor suggested

CellCept in

> <DIV></DIV>>place of Imuran? Has anyone discussed the possibility of Chronic

Fatigue

> <DIV></DIV>>Syndrome? Best wishes.

> <DIV></DIV>>Harper

> <DIV></DIV></div><br clear=all><hr>Get your FREE download of MSN Explorer at

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[Guest guest]

I think the doctors just don't realize the problems and stress associated with

any hep. I need to get some weight off..I have gained 40 pounds this year and

now besides having Hep c I have " fatty Liver Disease " which is my liver

dis-solving into fat. I found swimming was great exercise but then the sharks

got sooo active..walking was tolerated but barely ..then we had west nile virus

alerts.Went to the doctor yesterday and gained 5 more lbs.To exercise means more

energy......sigh

Bonnie

Re: [ ] liver biopsy

> <DIV></DIV>>Date: Wed, 3 Oct 2001 20:59:14 EDT

> <DIV></DIV>>

> <DIV></DIV>>In a message dated 10/3/01 5:30:34 PM Pacific Daylight Time,

> <DIV></DIV>>jaknjills@... writes:

> <DIV></DIV>>

> <DIV></DIV>>

> <DIV></DIV>> > Hello harper, thanks for the welcome. I`m not on anything but

steroids as i

> <DIV></DIV>> > could not tolarate imuran. They tried me on it twice. Each time

it made me

> <DIV></DIV>> > so sick. Long before being diagnosed with auto immune hep i

found that i

> <DIV></DIV>> > had become allergic to many things.My whole body aches, my skin

gets itchy

> <DIV></DIV>> > and irritated. My eyes feel tired. I just feel really ill. The

doctors

> <DIV></DIV>> > don`t seem to think any of this is related.I`m not sure exactly

when the

> <DIV></DIV>> > hepatitus started but about six years ago, i started being sick

alot,

> <DIV></DIV>> > feeling dizzy, joints swelling, fatigued. Are these symptoms of

hep. My

> <DIV></DIV>> > moods seem to have gone crazy as well.I feel when i approach

doctors about

> <DIV></DIV>> > all these things thaythink i`m some hyperchondriac, but to me

its turned my

> <DIV></DIV>> >

> <DIV></DIV>>

> <DIV></DIV>>I'm very sorry you're feeling so bad. Has your doctor suggested

CellCept in

> <DIV></DIV>>place of Imuran? Has anyone discussed the possibility of Chronic

Fatigue

> <DIV></DIV>>Syndrome? Best wishes.

> <DIV></DIV>>Harper

> <DIV></DIV></div><br clear=all><hr>Get your FREE download of MSN Explorer at

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[Guest guest]

to hear that your experiencing the same symptoms. I know what you mean about people thinking you hust want sympathy. I felt the same. I would be very interested in hearing your story, if you want to e-mail me personally my address is jaknjills@... I`m sorry to hear about your tears, i know exactly how you feel. I hope you manage to get some relief from these problems soon. Love and best wishes jacquiDear bonnie, i`m sorry

>From: "Bonnie Kirchenbauer"

>Reply- > >Subject: Re: [ ] liver biopsy >Date: Sat, 06 Oct 2001 02:43:50 +0800 > >I too have the symptoms that you described..going through a crying spell this morning as a matter of fact. Then add the trauma of what is going on in the states and bang...went for more blood work today and after 5 sticks they finally got it. After this I will know if I have to go for the liver biopsy. After years of people thinking I was just looking for sympathy , I finally have everyones attention. Though I am not at end stage,it is a rough road. Was told now I have Hep C and the tests are to see if I kicked it or still have the viral.If I kicked it I will be back to square 1 as far as what is causing my difficulty.The stress from the bloodwork has had me in tears for most of the day. > >Hugs to all >Bonnie > Re: [ ] liver biopsy > > >Date: Wed, 3 Oct 2001 20:59:14 EDT > > > > > >In a message dated 10/3/01 5:30:34 PM Pacific Daylight Time, > > >jaknjills@... writes: > > > > > > > > > > Hello harper, thanks for the welcome. I`m not on anything but steroids as i > > > > could not tolarate imuran. They tried me on it twice. Each time it made me > > > > so sick. Long before being diagnosed with auto immune hep i found that i > > > > had become allergic to many things.My whole body aches, my skin gets itchy > > > > and irritated. My eyes feel tired. I just feel really ill. The doctors > > > > don`t seem to think any of this is related.I`m not sure exactly when the > > > > hepatitus started but about six years ago, i started being sick alot, > > > > feeling dizzy, joints swelling, fatigued. Are these symptoms of hep. My > > > > moods seem to have gone crazy as well.I feel when i approach doctors about > > > > all these things thaythink i`m some hyperchondriac, but to me its turned my > > > > > > > > > >I'm very sorry you're feeling so bad. Has your doctor suggested CellCept in > > >place of Imuran? Has anyone discussed the possibility of Chronic Fatigue > > >Syndrome? Best wishes. > > >Harper > >

Get your FREE download of MSN Explorer at http://explorer.msn.com

> >

> > > > > > > > > >

> >

> >

[Guest guest]

Bonnie, I hear that! I have been working out at the gym, but the past three weeks...just since the doctor decreased my prednisone and increased my Imuran, I have NOT had the oomph to do more than one day at week! It kills me...I miss those highs that come with the exercise! I hope that I can get the meds adjusted to make me feel better!

debby

Re: [ ] liver biopsy > <DIV></DIV>>Date: Wed, 3 Oct 2001 20:59:14 EDT > <DIV></DIV>> > <DIV></DIV>>In a message dated 10/3/01 5:30:34 PM Pacific Daylight Time, > <DIV></DIV>>jaknjills@... writes: > <DIV></DIV>> > <DIV></DIV>> > <DIV></DIV>> > Hello harper, thanks for the welcome. I`m not on anything but steroids as i > <DIV></DIV>> > could not tolarate imuran. They tried me on it twice. Each time it made me > <DIV></DIV>> > so sick. Long before being diagnosed with auto immune hep i found that i > <DIV></DIV>> > had become allergic to many things.My whole body aches, my skin gets itchy > <DIV></DIV>> > and irritated. My eyes feel tired. I just feel really ill. The doctors > <DIV></DIV>> > don`t seem to think any of this is related.I`m not sure exactly when the > <DIV></DIV>> > hepatitus started but about six years ago, i started being sick alot, > <DIV></DIV>> > feeling dizzy, joints swelling, fatigued. Are these symptoms of hep. My > <DIV></DIV>> > moods seem to have gone crazy as well.I feel when i approach doctors about > <DIV></DIV>> > all these things thaythink i`m some hyperchondriac, but to me its turned my > <DIV></DIV>> > > <DIV></DIV>> > <DIV></DIV>>I'm very sorry you're feeling so bad. Has your doctor suggested CellCept in > <DIV></DIV>>place of Imuran? Has anyone discussed the possibility of Chronic Fatigue > <DIV></DIV>>Syndrome? Best wishes. > <DIV></DIV>>Harper > <DIV></DIV></div><br clear=all><hr>Get your FREE download of MSN Explorer at <a href='http://go.msn.com/bql/hmtag_itl_EN.asp'>http://explorer.msn.com</a><br>> <br>> > <!-- |**|begin egp html banner|**| -->> > <table border=0 cellspacing=0 cellpadding=2>> <tr bgcolor=#FFFFCC>> <td align=center><font size="-1" color=#003399><b>

[Guest guest]

In a message dated 11/14/01 7:01:41 AM Pacific Standard Time, sunshinedotson@... writes:

hi my name is bert. short for bertha....i just joined this support group last night....i was diagnosed a month ago --haven't under gone any treatment yet.....just moved to baycity and just!! found a dr. who accepts my ins. well, anyways.....bec my enyzeme levels were so high i will probably have a biopsy too......

Welcome, Bert. In order to get a reliable diagnosis, you really need to have a biopsy. If the biopsy shows you do have AIH, then it's important to begin treatment quickly. This is not something you want to drag your feet on. AIH is a serious disease, and prompt and appropriate treatment can make a big difference. Keep in touch. Best wishes.

Harper (AIH dx 5/00)

[Guest guest]

thank you very much harper.....i needed that right now.....

good advice is hard to come by sometimes.....

bert.

[Guest guest]

Theresa, Some have Liver Biopsys done and they feel little discomfort. That

is GREAT. Some feel more discomfort. I felt the more discomfort, Not at

the site where they went in, but in my neck. On the right side above my

collar bone. My doctoe who did it said that a small percentage of people

feel this. What the pain was, was a nerve that runs from liver to neck. It

went completly away after 2 days. Ironicaly(SP) when my liver hurts my neck

also hurts????? I hope you feel little discomfort. This is something you

have to do for LIVER HEALTH. Lucy

[Guest guest]

Hello bert, Keep in touch with your doctor. If they are knowledgable in

AIH, they will know what to do. Treatment is pretty straight forward. Some

would say the medication Side effects are worse than the symptoms of AIH.

You must go through them. Things get better with treatment down the road.

If you have any questions about treatment and what I have gone through, ASK

AWAY. Maybe I can help. LUCY. AIH 1997

[Guest guest]

Bert, I'll explain a little more about the importance of a biopsy in diagnosing AIH.

My doctor is something of an authority locally (in San Francisco) on AIH. At a major HMO, he has about a dozen patients with AIH. I was extremely ill when I got to a doctor, exhibiting the classic symptoms and lab readings, and I was given a cat-scan immediately. I had a biopsy the first thing the following morning.

The point I'm getting to is that, even though I showed all the signs of AIH, my experienced doctor said I should not begin treatment until he got a biopsy report. Treatment is a serious undertaking, and only a biopsy has a high enough probability of giving a definitive diagnosis. (There is no way to be 100% sure that you have AIH, but a biopsy gives very, very strong clues.) I have a friend whom I met after we became ill. She and I began to show the same symptoms at the same time. Her doctor didn't think of AIH, and she didn't get a biopsy or the appropriate treatment. Four months after I was diagnosed and beginning to recover, she was in a coma and getting a liver transplant. Don't fool around with this.

Harper (AIH dx 5/00)

[Guest guest]

thanks, kenneth......i do appreciate any input......its really nice to finally be able to talk with people who understand.....

bert.

[Guest guest]

Bert,

Please don't look at this disease as a death sentence because maybe it won't be. As for your pain I have Fibromyalgia so everyday I have to take pain medication in order to cope for the day. You might ask your doc about this. It is chronic pain and seems to go along with liver problems. Many people here complain of the same and many have fibromyalgia. No, your family and friends will not have the strength or ever understand why you feel like you do. Don't allow your family or docs to intimidate you. It is hard to be alone and have many things wrong. I have 12 other major health problems so I take 17 scripts every day. We all understand.

gayle trans/6-99 ^oo^

galye@...

[Guest guest]

thank you and i most certaintly ask about the fibromylgia.

i just want to be the old me again......feeling desperate....

take care and god bless....

bert.

[Guest guest]

Gayle......it just hit me.......you take all that medicine for pain.......oh my....bless your heart.....how long have you been dealing with this?????

i just can't imagine.....really i just can't.....

is there a cure for this???

or does it just get under control......like remission........??????

does anyone know???

bert.

[Guest guest]

Bert, I'm so sorry to hear of your difficulties. I certainly don't have any simple answers for you.

Perhaps it will be of some comfort to you to know that one study done in England showed that most people with AIH who stick to standard treatment live a normal life span.

Best wishes. Hang in there.

Harper (yes, that's my name. I'm a woman, 57, with one daughter, who is ill.)

[Guest guest]

In a message dated 11/14/01 2:25:09 PM Pacific Standard Time, sunshinedotson@... writes:

is there a cure for this???

or does it just get under control......like remission........??????

does anyone know???

bert.

AIH can't be cured, but about 80% of people respond well to treatment. Remission is achieved, on average, in about two years, some earlier, some later. (I don't know just how remission is defined.) For people who don't respond to treatment, transplant is the next goal. In order to be viewed as a good candidate to transplant, I think it's important to show that you take your medications regularly and have a supportive background. Others can tell you more than I about that. I know someone who had a transplant last summer; she says she feels better than she has in years. Of course, there is much variation in how people respond to transplants, just as there is variation in the disease in general and in people's response to drug treatment.

Harper

[Guest guest]

hi jeanette, i see my new dr. next week, then i will know when the biopsy is......if he says i need one.....i am already pretty certain i will.......after gathering all my info, and tallking to you all....mostly bec of how i feel.

it's nice to meet all of you.....

i will remain in contact probably everyday..... :-)

thanks again, bert.

[Guest guest]

your daughter is ill????? whats wrong may i ask????

bert.

[Guest guest]

i appreciate your e-mail denise......this group feels like such a comfort zone for me right now.....

i am so sorry that all of you have had to suffer....just doesn't seem fair!! does it...????

i am so nervous to tell my kids....they have been through so much with other stuff.....and tonight i just found out that my husbands grandma is passing away as we speak.....the whole family is there but me and my 3 boys...my other 3 step boys are with their other mom. my husband works out of town all this week near her, so he can be there...i cant go bec i can no longer drive at night.......my vision is getting worse....i only used to wear glasses for reading......now i need a script...partly bec of the diabetes and my illness i guess...don't really know for sure....she is also 2 to 3 hours of a drive for me....and i just can't do it....i want to be there but can't....i am beside myself right now......talking with you all is my outlet......anyways......

she is in her mid 80's, she has had several health issues to.....bec of age.....

she is the sweetest ole' lady you'd ever wanna meet.....

life sucks......excuse me please..sorry...

i have to go, talk with you all tomorrow....

gotta keep the phone line open....bec of grandma.

luv you all...bert.

[Guest guest]

Regarding being worried about telling your children: if you do have AIH, what there is to tell them is good news. Now you know what's wrong and you can get started on treatment for it. They can tell you're not well; now you can begin to get better. This is NOT a death sentence. It's simply a disease.

Harper