Re: Biopsy results and Prednisone

[Guest guest]

Hi,

just had to comment the temperature - I am exactly the same.

The sicker I am, the lower my temp. I've heard that it

sometimes happens with hypothyroidism, but I don't know for sure.

As to sleeping pills: I take quite regularly, probably more

often than I should, something that is called Stilnoct in

Europe and I think Ambien in the US. They are not the kind of

sleeping pills that knock you unconscious altogether, but

rather help you to fall asleep. They contain zolpidem which

has a shortish half time and should therefore be reasonably

safe, liver wise. I like the fact that they don't have the

kind of carryover effects the next day as some other sleeping

pills do. They have worked fine with me and haven't affected

my liver values, but it is safest to ask your own doctors.

Can't help with the moon face, unfortunately. Mine was and

still is quite awful and it was the first side effect I

noticed, along with the effects on the skin. My baby bottom

cheeks turned into something resembling a toad's back and I

have nasty looking liver spots on my neck and ugly little

drooping moles around the eyes and on the underside of the

arms (and those are weird because they come and go).

Just curious, why do you say the biopsy was horrible? Did

something go wrong? There is a member on the Finnish AIH list

who had a horrible experience with a young doctor who

apparently didn't quite know what he was doing. After several

tries he hit a nerve or something, the patient went into some

sort of pain shock and afterwards had to go to physiotherapy

for months, as she temporarily lost part of the movement in

the right arm. She said giving birth to a 5 kg baby and an

open fracture were picnics compared to the biopsy. She also

said if they ever want to do another biopsy they're going to

have to knock her completely unconscious first...

Having said that, mine was completely painless as were the

others' in the same ward (different hospital from the above),

according to themselves.

Still, that story gives me the creeps every time I think about

it.

Jaana

shwdlbllrd wrote:

>

>

> hi to all!! You guys have been really great and I really appreciate

> the responses I get from my posts.

>

> I received the report from my liver biopsy the other day and it

> wasn't good, but it wasn't bad. My inflammation and stages are at a

> 1 level which is mild. However, I have moderate to severe fatty

> liver disease and I have portal fibrosis. The point of the biopsy

> was to figure out exactly what was going on with my liver, but the

> gastro says he doesn't know. It could be that I have NASH

> (nonalcoholic steatohepatitis) (which only 10-15% causes fibrosis or

> cirrhosis) or the AIH may be causing the fibrosis from inflammation.

> So, we still have no definite dignosis. The gastro says that people

> who have AIH typically have actin antibodies higher than mine. Mine

> was 26- mildly positive. For some reason he thinks unless it is

> mostly positive 30 or higher it isn't AIH. I'm not textbook and

> never have been. When I get sick, my temp drops instead of going up.

> It's weird-I know. You would think by now they would stop going by

> the book!

>

> So, we are drawing a new set of LFT's Monday morning since my latest

> ones were done in July, and starting on 40 mg Prednisone for 4 weeks

> and repeat the LFTs then and go from there. The LFTs won't get

> better with the Pred, but if its AIH causing the damage, there

> should be a response.

>

> Why didn't they just do the prednisone to start with instead of

> putting me through the biopsy- it was horrible! Also, I am very

> concerned about the Prednisone side effects. I already have

> osteopenia and have broken my arm and my tail bone in the past 4

> years, will the prednisone make my bones even more brittle? I'm

> overweight already and don't look forward to getting the chipmunk

> cheek effect. Did any of you not get the moon face?

>

> My 82 y.o. grandmother has no idea what is going on with me right

> now b/c I don't want to worry her since she is having MAJOR health

> problems right now. What do I tell her when my face starts filling

> out? I've already been warned about the insomnia too. Is it ok to

> take Benadryl or something to knock me out if I can't sleep? What

> was the first and most prominent side effects ya'll experienced?

>

>

--

Jaana Fogl

jfogl at saunalahti.fi

*************************************

* I am a Bear of Very Little Brain, *

* and long words Bother me. *

* - Winnie the Pooh *

*************************************

[Guest guest]

First of all, Stage 1 is something to celebrate. Most AIH patients do not

find out something is wrong until there is considerable more liver damage. You

now have the luxury of some time to figure out what is going.

I have AIH and am one of those in the percentage that does not test positive

for the anitbodies. I forgot what percentage my liver specialist told me

that was.

In terms of prednisone, you do not need to worry about the bone loss unless

you are going to be on it for an extended period. (I believe a year and up).

Unfortunately the moon face comes quicker. My experience has been the moon

face comes after about 2-3 months. For the first month you will probably have

more of the " ramped up " feeling and possibly some agitation.

I know uncertainty is scary, but feel some grace by the fact that you have

caught whatever it is so early, that your liver is still in good shape.

Roxanne

[Guest guest]

Hi,

As far as I can understand this, fatty liver disease can lead to NASH (which

is a little

bit worse). So that if the biopsy showed fatty liver, you actually received

better news. I know that it's frustrating when they can't make a definite dx. I

can't imagine working in

their field because nothing appears to be " black or white " . And there can be a

number

of people with the same dignosis & yet, they have varying symptoms. I've never

been on Predisone but know that the side effects aren't pleasant. Are you

scheduled to go back any time soon? Keep us posted.

shwdlbllrd <momcat30@...> wrote:

hi to all!! You guys have been really great and I really appreciate

the responses I get from my posts.

I received the report from my liver biopsy the other day and it

wasn't good, but it wasn't bad. My inflammation and stages are at a

1 level which is mild. However, I have moderate to severe fatty

liver disease and I have portal fibrosis. The point of the biopsy

was to figure out exactly what was going on with my liver, but the

gastro says he doesn't know. It could be that I have NASH

(nonalcoholic steatohepatitis) (which only 10-15% causes fibrosis or

cirrhosis) or the AIH may be causing the fibrosis from inflammation.

So, we still have no definite dignosis. The gastro says that people

who have AIH typically have actin antibodies higher than mine. Mine

was 26- mildly positive. For some reason he thinks unless it is

mostly positive 30 or higher it isn't AIH. I'm not textbook and

never have been. When I get sick, my temp drops instead of going up.

It's weird-I know. You would think by now they would stop going by

the book!

So, we are drawing a new set of LFT's Monday morning since my latest

ones were done in July, and starting on 40 mg Prednisone for 4 weeks

and repeat the LFTs then and go from there. The LFTs won't get

better with the Pred, but if its AIH causing the damage, there

should be a response.

Why didn't they just do the prednisone to start with instead of

putting me through the biopsy- it was horrible! Also, I am very

concerned about the Prednisone side effects. I already have

osteopenia and have broken my arm and my tail bone in the past 4

years, will the prednisone make my bones even more brittle? I'm

overweight already and don't look forward to getting the chipmunk

cheek effect. Did any of you not get the moon face?

My 82 y.o. grandmother has no idea what is going on with me right

now b/c I don't want to worry her since she is having MAJOR health

problems right now. What do I tell her when my face starts filling

out? I've already been warned about the insomnia too. Is it ok to

take Benadryl or something to knock me out if I can't sleep? What

was the first and most prominent side effects ya'll experienced?

[Guest guest]

That is not a terrible diagnosis, at least it's been caught before you were in a

later stage. I thank God every day that mine was caught early enough for

treatment to be effective.

Prednisone: I've been on and off (mostly on) for about 10 years for eczema.

The moon face comes quickly with a dosage goes over 5 mg., otherwise it's slow.

My biggest complaint about Pred is the weight gain, and the ravenous appetite.

I am hungry constantly, which is NOT a good thing, but it does work. Pred is the

drug we love AND hate. It will make you fat, sleepy, grouchy, moon-faced,

bruised, and lot of other side effects, but it will help you so very much. You

can offset the risk to your bones with calcium or exercise, or both. Do NOT

ever go off Prednisone without your drs assistance. I did, many times. Off

and then on, repeatedly, not knowing the damage i might be doing to my kidneys.

Although it says on the rx not to do it, no one ever said " Why " or what might

happen, so I just 'tapered' myself off it. Of course I didn't taper it

correctly. Now I hope that I've not done any damage. So be very careful about

that !!

Patsy (63) El Mirage, AZ

DX 2005 Stage 1 PBC

AIH/SLE/RA

[ ] Biopsy results and Prednisone

[Guest guest]

As far as the biopsy, the meds they gave me to sedate me never did anything. I

was wide awake the whole time. They said they had given me enough to put a horse

out, but couldn't give me anymore. So I suffered through it all. The lidocaine

that was supposed to numb it, ha! If it numbed it any, I sure as heck wouldn't

be having one without the lidocaine. It hurt so badly and I was sore for days! I

had mine dome in the USA by the way.

Re: [ ] Biopsy results and Prednisone

Hi,

just had to comment the temperature - I am exactly the same.

The sicker I am, the lower my temp. I've heard that it

sometimes happens with hypothyroidism, but I don't know for sure.

As to sleeping pills: I take quite regularly, probably more

often than I should, something that is called Stilnoct in

Europe and I think Ambien in the US. They are not the kind of

sleeping pills that knock you unconscious altogether, but

rather help you to fall asleep. They contain zolpidem which

has a shortish half time and should therefore be reasonably

safe, liver wise. I like the fact that they don't have the

kind of carryover effects the next day as some other sleeping

pills do. They have worked fine with me and haven't affected

my liver values, but it is safest to ask your own doctors.

Can't help with the moon face, unfortunately. Mine was and

still is quite awful and it was the first side effect I

noticed, along with the effects on the skin. My baby bottom

cheeks turned into something resembling a toad's back and I

have nasty looking liver spots on my neck and ugly little

drooping moles around the eyes and on the underside of the

arms (and those are weird because they come and go).

Just curious, why do you say the biopsy was horrible? Did

something go wrong? There is a member on the Finnish AIH list

who had a horrible experience with a young doctor who

apparently didn't quite know what he was doing. After several

tries he hit a nerve or something, the patient went into some

sort of pain shock and afterwards had to go to physiotherapy

for months, as she temporarily lost part of the movement in

the right arm. She said giving birth to a 5 kg baby and an

open fracture were picnics compared to the biopsy. She also

said if they ever want to do another biopsy they're going to

have to knock her completely unconscious first...

Having said that, mine was completely painless as were the

others' in the same ward (different hospital from the above),

according to themselves.

Still, that story gives me the creeps every time I think about

it.

Jaana

shwdlbllrd wrote:

>

>

> hi to all!! You guys have been really great and I really appreciate

> the responses I get from my posts.

>

> I received the report from my liver biopsy the other day and it

> wasn't good, but it wasn't bad. My inflammation and stages are at a

> 1 level which is mild. However, I have moderate to severe fatty

> liver disease and I have portal fibrosis. The point of the biopsy

> was to figure out exactly what was going on with my liver, but the

> gastro says he doesn't know. It could be that I have NASH

> (nonalcoholic steatohepatitis) (which only 10-15% causes fibrosis or

> cirrhosis) or the AIH may be causing the fibrosis from inflammation.

> So, we still have no definite dignosis. The gastro says that people

> who have AIH typically have actin antibodies higher than mine. Mine

> was 26- mildly positive. For some reason he thinks unless it is

> mostly positive 30 or higher it isn't AIH. I'm not textbook and

> never have been. When I get sick, my temp drops instead of going up.

> It's weird-I know. You would think by now they would stop going by

> the book!

>

> So, we are drawing a new set of LFT's Monday morning since my latest

> ones were done in July, and starting on 40 mg Prednisone for 4 weeks

> and repeat the LFTs then and go from there. The LFTs won't get

> better with the Pred, but if its AIH causing the damage, there

> should be a response.

>

> Why didn't they just do the prednisone to start with instead of

> putting me through the biopsy- it was horrible! Also, I am very

> concerned about the Prednisone side effects. I already have

> osteopenia and have broken my arm and my tail bone in the past 4

> years, will the prednisone make my bones even more brittle? I'm

> overweight already and don't look forward to getting the chipmunk

> cheek effect. Did any of you not get the moon face?

>

> My 82 y.o. grandmother has no idea what is going on with me right

> now b/c I don't want to worry her since she is having MAJOR health

> problems right now. What do I tell her when my face starts filling

> out? I've already been warned about the insomnia too. Is it ok to

> take Benadryl or something to knock me out if I can't sleep? What

> was the first and most prominent side effects ya'll experienced?

>

>

--

Jaana Fogl

jfogl at saunalahti.fi

*************************************

* I am a Bear of Very Little Brain, *

* and long words Bother me. *

* - Winnie the Pooh *

*************************************

[Guest guest]

I do keep looking at the bright side of that! They are estimating that whatever

it is that I've had it about 1 year or a little longer. Does having it for one

year and already being stage one show any indication of how slow or fast the

disease is progressing?

Re: [ ] Biopsy results and Prednisone

First of all, Stage 1 is something to celebrate. Most AIH patients do not

find out something is wrong until there is considerable more liver damage. You

now have the luxury of some time to figure out what is going.

I have AIH and am one of those in the percentage that does not test positive

for the anitbodies. I forgot what percentage my liver specialist told me

that was.

In terms of prednisone, you do not need to worry about the bone loss unless

you are going to be on it for an extended period. (I believe a year and up).

Unfortunately the moon face comes quicker. My experience has been the moon

face comes after about 2-3 months. For the first month you will probably have

more of the " ramped up " feeling and possibly some agitation.

I know uncertainty is scary, but feel some grace by the fact that you have

caught whatever it is so early, that your liver is still in good shape.

Roxanne

[Guest guest]

Hi,

ouch, that sounds very unpleasant indeed!

Here (Finland) they normally use a mild sedative, if any (many

people seem to feel they don't need it - not me, though!)

together with the local anaesthesia.

Thankfully the local worked perfectly in my case - I didn't

feel either the injection of the stuff or the operation

itself. I just heard the click of the biopsy instrument which

was some sort of needle gun, for want of a better word: it

went in an out in a fraction of a second - a bit like having

one's earlobes pierced. I was actually quite surprised as I

was expecting some sort of horrible long needle and some

probing and searching. Instead, it was all over in a couple of

seconds.

What actually did hurt a bit was the ultrasound device which

the doctor was pressing quite hard against my side in order to

find the right spot. I am overweight, so it is more difficult

to get a clear view and therefore ultrasounds always involve a

certain amount of discomfort for me.

I wasn't particularly sore afterwards either, but some other

people complained about that. What I hated the most was having

to lie still on my back for hours afterwards!

Jaana

Shawdale Ballard wrote:

>

>

> As far as the biopsy, the meds they gave me to sedate me never did

> anything. I was wide awake the whole time. They said they had given me

> enough to put a horse out, but couldn't give me anymore. So I suffered

> through it all. The lidocaine that was supposed to numb it, ha! If it

> numbed it any, I sure as heck wouldn't be having one without the

> lidocaine. It hurt so badly and I was sore for days! I had mine dome in

> the USA by the way.

> Re: [ ] Biopsy results and Prednisone

>

> Hi,

>

> just had to comment the temperature - I am exactly the same.

> The sicker I am, the lower my temp. I've heard that it

> sometimes happens with hypothyroidism, but I don't know for sure.

>

> As to sleeping pills: I take quite regularly, probably more

> often than I should, something that is called Stilnoct in

> Europe and I think Ambien in the US. They are not the kind of

> sleeping pills that knock you unconscious altogether, but

> rather help you to fall asleep. They contain zolpidem which

> has a shortish half time and should therefore be reasonably

> safe, liver wise. I like the fact that they don't have the

> kind of carryover effects the next day as some other sleeping

> pills do. They have worked fine with me and haven't affected

> my liver values, but it is safest to ask your own doctors.

>

> Can't help with the moon face, unfortunately. Mine was and

> still is quite awful and it was the first side effect I

> noticed, along with the effects on the skin. My baby bottom

> cheeks turned into something resembling a toad's back and I

> have nasty looking liver spots on my neck and ugly little

> drooping moles around the eyes and on the underside of the

> arms (and those are weird because they come and go).

>

> Just curious, why do you say the biopsy was horrible? Did

> something go wrong? There is a member on the Finnish AIH list

> who had a horrible experience with a young doctor who

> apparently didn't quite know what he was doing. After several

> tries he hit a nerve or something, the patient went into some

> sort of pain shock and afterwards had to go to physiotherapy

> for months, as she temporarily lost part of the movement in

> the right arm. She said giving birth to a 5 kg baby and an

> open fracture were picnics compared to the biopsy. She also

> said if they ever want to do another biopsy they're going to

> have to knock her completely unconscious first...

> Having said that, mine was completely painless as were the

> others' in the same ward (different hospital from the above),

> according to themselves.

> Still, that story gives me the creeps every time I think about

> it.

>

> Jaana

>

> shwdlbllrd wrote:

> >

> >

> > hi to all!! You guys have been really great and I really appreciate

> > the responses I get from my posts.

> >

> > I received the report from my liver biopsy the other day and it

> > wasn't good, but it wasn't bad. My inflammation and stages are at a

> > 1 level which is mild. However, I have moderate to severe fatty

> > liver disease and I have portal fibrosis. The point of the biopsy

> > was to figure out exactly what was going on with my liver, but the

> > gastro says he doesn't know. It could be that I have NASH

> > (nonalcoholic steatohepatitis) (which only 10-15% causes fibrosis or

> > cirrhosis) or the AIH may be causing the fibrosis from inflammation.

> > So, we still have no definite dignosis. The gastro says that people

> > who have AIH typically have actin antibodies higher than mine. Mine

> > was 26- mildly positive. For some reason he thinks unless it is

> > mostly positive 30 or higher it isn't AIH. I'm not textbook and

> > never have been. When I get sick, my temp drops instead of going up.

> > It's weird-I know. You would think by now they would stop going by

> > the book!

> >

> > So, we are drawing a new set of LFT's Monday morning since my latest

> > ones were done in July, and starting on 40 mg Prednisone for 4 weeks

> > and repeat the LFTs then and go from there. The LFTs won't get

> > better with the Pred, but if its AIH causing the damage, there

> > should be a response.

> >

> > Why didn't they just do the prednisone to start with instead of

> > putting me through the biopsy- it was horrible! Also, I am very

> > concerned about the Prednisone side effects. I already have

> > osteopenia and have broken my arm and my tail bone in the past 4

> > years, will the prednisone make my bones even more brittle? I'm

> > overweight already and don't look forward to getting the chipmunk

> > cheek effect. Did any of you not get the moon face?

> >

> > My 82 y.o. grandmother has no idea what is going on with me right

> > now b/c I don't want to worry her since she is having MAJOR health

> > problems right now. What do I tell her when my face starts filling

> > out? I've already been warned about the insomnia too. Is it ok to

> > take Benadryl or something to knock me out if I can't sleep? What

> > was the first and most prominent side effects ya'll experienced?

> >

> >

>

> --

> Jaana Fogl

> jfogl at saunalahti.fi

>

> *************************************

> * I am a Bear of Very Little Brain, *

> * and long words Bother me. *

> * - Winnie the Pooh *

> *************************************

>

>

[Guest guest]

My 1st biopsy was awful. What the doctor said would be " mild discomfort for a

split second " felt like a Mack truck crashed into my rib! And suddenly, I had

nurses taking

my blood pressure in each arm & the the bed had been placed in the

trendelenberg postion (head down). I glanced at the monitor behind me & saw that

my B/P was 76/40. My procedure was scheduled for 7 a.m. and I was finally

discharged in the early evening.

I had a second one about 7 yrs. later, expecting the worst. And it went very

well.

Jaana Fogl <jfogl@...> wrote:

Hi,

ouch, that sounds very unpleasant indeed!

Here (Finland) they normally use a mild sedative, if any (many

people seem to feel they don't need it - not me, though!)

together with the local anaesthesia.

Thankfully the local worked perfectly in my case - I didn't

feel either the injection of the stuff or the operation

itself. I just heard the click of the biopsy instrument which

was some sort of needle gun, for want of a better word: it

went in an out in a fraction of a second - a bit like having

one's earlobes pierced. I was actually quite surprised as I

was expecting some sort of horrible long needle and some

probing and searching. Instead, it was all over in a couple of

seconds.

What actually did hurt a bit was the ultrasound device which

the doctor was pressing quite hard against my side in order to

find the right spot. I am overweight, so it is more difficult

to get a clear view and therefore ultrasounds always involve a

certain amount of discomfort for me.

I wasn't particularly sore afterwards either, but some other

people complained about that. What I hated the most was having

to lie still on my back for hours afterwards!

Jaana

Shawdale Ballard wrote:

>

>

> As far as the biopsy, the meds they gave me to sedate me never did

> anything. I was wide awake the whole time. They said they had given me

> enough to put a horse out, but couldn't give me anymore. So I suffered

> through it all. The lidocaine that was supposed to numb it, ha! If it

> numbed it any, I sure as heck wouldn't be having one without the

> lidocaine. It hurt so badly and I was sore for days! I had mine dome in

> the USA by the way.

> Re: [ ] Biopsy results and Prednisone

>

> Hi,

>

> just had to comment the temperature - I am exactly the same.

> The sicker I am, the lower my temp. I've heard that it

> sometimes happens with hypothyroidism, but I don't know for sure.

>

> As to sleeping pills: I take quite regularly, probably more

> often than I should, something that is called Stilnoct in

> Europe and I think Ambien in the US. They are not the kind of

> sleeping pills that knock you unconscious altogether, but

> rather help you to fall asleep. They contain zolpidem which

> has a shortish half time and should therefore be reasonably

> safe, liver wise. I like the fact that they don't have the

> kind of carryover effects the next day as some other sleeping

> pills do. They have worked fine with me and haven't affected

> my liver values, but it is safest to ask your own doctors.

>

> Can't help with the moon face, unfortunately. Mine was and

> still is quite awful and it was the first side effect I

> noticed, along with the effects on the skin. My baby bottom

> cheeks turned into something resembling a toad's back and I

> have nasty looking liver spots on my neck and ugly little

> drooping moles around the eyes and on the underside of the

> arms (and those are weird because they come and go).

>

> Just curious, why do you say the biopsy was horrible? Did

> something go wrong? There is a member on the Finnish AIH list

> who had a horrible experience with a young doctor who

> apparently didn't quite know what he was doing. After several

> tries he hit a nerve or something, the patient went into some

> sort of pain shock and afterwards had to go to physiotherapy

> for months, as she temporarily lost part of the movement in

> the right arm. She said giving birth to a 5 kg baby and an

> open fracture were picnics compared to the biopsy. She also

> said if they ever want to do another biopsy they're going to

> have to knock her completely unconscious first...

> Having said that, mine was completely painless as were the

> others' in the same ward (different hospital from the above),

> according to themselves.

> Still, that story gives me the creeps every time I think about

> it.

>

> Jaana

>

> shwdlbllrd wrote:

> >

> >

> > hi to all!! You guys have been really great and I really appreciate

> > the responses I get from my posts.

> >

> > I received the report from my liver biopsy the other day and it

> > wasn't good, but it wasn't bad. My inflammation and stages are at a

> > 1 level which is mild. However, I have moderate to severe fatty

> > liver disease and I have portal fibrosis. The point of the biopsy

> > was to figure out exactly what was going on with my liver, but the

> > gastro says he doesn't know. It could be that I have NASH

> > (nonalcoholic steatohepatitis) (which only 10-15% causes fibrosis or

> > cirrhosis) or the AIH may be causing the fibrosis from inflammation.

> > So, we still have no definite dignosis. The gastro says that people

> > who have AIH typically have actin antibodies higher than mine. Mine

> > was 26- mildly positive. For some reason he thinks unless it is

> > mostly positive 30 or higher it isn't AIH. I'm not textbook and

> > never have been. When I get sick, my temp drops instead of going up.

> > It's weird-I know. You would think by now they would stop going by

> > the book!

> >

> > So, we are drawing a new set of LFT's Monday morning since my latest

> > ones were done in July, and starting on 40 mg Prednisone for 4 weeks

> > and repeat the LFTs then and go from there. The LFTs won't get

> > better with the Pred, but if its AIH causing the damage, there

> > should be a response.

> >

> > Why didn't they just do the prednisone to start with instead of

> > putting me through the biopsy- it was horrible! Also, I am very

> > concerned about the Prednisone side effects. I already have

> > osteopenia and have broken my arm and my tail bone in the past 4

> > years, will the prednisone make my bones even more brittle? I'm

> > overweight already and don't look forward to getting the chipmunk

> > cheek effect. Did any of you not get the moon face?

> >

> > My 82 y.o. grandmother has no idea what is going on with me right

> > now b/c I don't want to worry her since she is having MAJOR health

> > problems right now. What do I tell her when my face starts filling

> > out? I've already been warned about the insomnia too. Is it ok to

> > take Benadryl or something to knock me out if I can't sleep? What

> > was the first and most prominent side effects ya'll experienced?

> >

> >

>

> --

> Jaana Fogl

> jfogl at saunalahti.fi

>

> *************************************

> * I am a Bear of Very Little Brain, *

> * and long words Bother me. *

> * - Winnie the Pooh *

> *************************************

>

>

[Guest guest]

That sounds quite a bit like the experience of the Finnish

list member. With her, they had managed to hit the ribs as

well as a nerve, apparently. Taking the blood pressure in each

arm sounds like something heart related...

All these horror stories are making me rather nervous - I *do*

hope they don't get it into their heads tomorrow to send me to

a biopsy... Originally I was told that a second biopsy would

probably be needed in a year or so, and that was two years

ago. I suppose as the values have come and stayed down there

hasn't been a need for a one. I just hope there aren't any

unpleasant surprises with the tests tomorrow.

My right side actually started hurting a while ago when I was

thinking about this - guess I am slowly turning into a

hypochondriac as well... :-(

Jaana

WOOTTEN wrote:

>

>

> My 1st biopsy was awful. What the doctor said would be " mild discomfort

> for a split second " felt like a Mack truck crashed into my rib! And

> suddenly, I had nurses taking

> my blood pressure in each arm & the the bed had been placed in the

> trendelenberg postion (head down). I glanced at the monitor behind me &

> saw that my B/P was 76/40. My procedure was scheduled for 7 a.m. and I

> was finally discharged in the early evening.

> I had a second one about 7 yrs. later, expecting the worst. And it went

> very well.

--

Jaana Fogl

jfogl at saunalahti.fi

*************************************

* I am a Bear of Very Little Brain, *

* and long words Bother me. *

* - Winnie the Pooh *

*************************************

[Guest guest]

Hi All,

Just thought I had to respond to the biopsy discussion. I've been a long,

long time member and this biopsy discussion comes around every 6 to 12 months.

I'd hate for a newbie to refuse to get a liver biopsy because a few folks had

a bad experience. The biopsy remains the most definitive test to tell you

what you have and the degree of your disease. Many times, you hear the few

folks

that had a bad experience and not the many that had an excellent experience.

My last biopsy was 6 months ago ..... it was my third in eight years. All

were done at the Mayo Clinic in sdale, Ariz. I've had enough of them now

that I don't even take the sedative. I've never had any pain or discomfort

...... just a sense of pressure when they take the biopsy.

My two cents worth! Go to a medical center that does this type of biopsy

every day ...... not once a month and make sure they use an ultra sound to guide

the biopsy. We are all dealing with a disease that is treatable and we are

responsible for our own health ..... get to a clinic that knows this disease

and treats it every day. If you can't do that, get as knowledgeable as you can

on your disease because you may have to become the expert for your doctor.

I hope this helps a newbie ..... get your biopsy.

Rick, male, 63, PBC/AIH, stage 1, '98

[Guest guest]

My motto is " Expect the worst & you'll be pleasantly surprised!

Jaana Fogl <jfogl@...> wrote: That sounds quite a bit like

the experience of the Finnish

list member. With her, they had managed to hit the ribs as

well as a nerve, apparently. Taking the blood pressure in each

arm sounds like something heart related...

All these horror stories are making me rather nervous - I *do*

hope they don't get it into their heads tomorrow to send me to

a biopsy... Originally I was told that a second biopsy would

probably be needed in a year or so, and that was two years

ago. I suppose as the values have come and stayed down there

hasn't been a need for a one. I just hope there aren't any

unpleasant surprises with the tests tomorrow.

My right side actually started hurting a while ago when I was

thinking about this - guess I am slowly turning into a

hypochondriac as well... :-(

Jaana

WOOTTEN wrote:

>

>

> My 1st biopsy was awful. What the doctor said would be " mild discomfort

> for a split second " felt like a Mack truck crashed into my rib! And

> suddenly, I had nurses taking

> my blood pressure in each arm & the the bed had been placed in the

> trendelenberg postion (head down). I glanced at the monitor behind me &

> saw that my B/P was 76/40. My procedure was scheduled for 7 a.m. and I

> was finally discharged in the early evening.

> I had a second one about 7 yrs. later, expecting the worst. And it went

> very well.

--

Jaana Fogl

jfogl at saunalahti.fi

*************************************

* I am a Bear of Very Little Brain, *

* and long words Bother me. *

* - Winnie the Pooh *

*************************************

[Guest guest]

Rick, I must agree with you on this. I was one who had an unpleasant experience

with the biopsy...the first one I was under general anesthesia and didn't know

(I had my gall bladder removed). The second one I had nothing but the numbing

medicing, but received excellent care for the pain afterwards...the third time,

I spent the night in the hospital...not the usualy situation, but one that STILL

was necessary.

For most people, there is some pain, but on the whole...I have to be perfectly

honest here...I am NOT one who can have these procedures done without

sedation...we know that now. This next one, and I imagine I will have to have

one next month, will be with total sedation...not under, but twilight sleep.

The biopsy is the MOST important factor in controlling this disease. Do I like

having them? Heck NO! But in order to have quality life, and WE CAN HAVE

quality life, it is vital to have the biopsy....a little amount of pain for a

lifetime of controlling this disease is WELL worth it!

Debby

[ ] Re: Biopsy results and Prednisone

Hi All,

Just thought I had to respond to the biopsy discussion. I've been a long,

long time member and this biopsy discussion comes around every 6 to 12 months.

I'd hate for a newbie to refuse to get a liver biopsy because a few folks had

a bad experience. The biopsy remains the most definitive test to tell you

what you have and the degree of your disease. Many times, you hear the few

folks

that had a bad experience and not the many that had an excellent experience.

My last biopsy was 6 months ago ..... it was my third in eight years. All

were done at the Mayo Clinic in sdale, Ariz. I've had enough of them now

that I don't even take the sedative. I've never had any pain or discomfort

..... just a sense of pressure when they take the biopsy.

My two cents worth! Go to a medical center that does this type of biopsy

every day ...... not once a month and make sure they use an ultra sound to

guide

the biopsy. We are all dealing with a disease that is treatable and we are

responsible for our own health ..... get to a clinic that knows this disease

and treats it every day. If you can't do that, get as knowledgeable as you can

on your disease because you may have to become the expert for your doctor.

I hope this helps a newbie ..... get your biopsy.

Rick, male, 63, PBC/AIH, stage 1, '98

[Guest guest]

>Thanks Rick......I was beginning to wonder if I was unusual? I was

diagnosed in June, had a biopsy in August. (It didn't hurt at all,

I was awake) What i hated was lying there afterwards for hours and

no food all day. The doctor was running late so I was still down

until 5 in the late afternoon.

But the good thing is I got the stage number and now will be going

to a hepa in 3 weeks, hopefully i am now doing the right things to

take care of myself and the biopsy was just one now tool to help me

get the care I need. Its not the best time in the world, but hey,

now of this medical stuff is " fun " Sus

> Hi All,

>

> Just thought I had to respond to the biopsy discussion. I've been

a long,

> long time member and this biopsy discussion comes around every 6

to 12 months.

> I'd hate for a newbie to refuse to get a liver biopsy because a

few folks had

> a bad experience. The biopsy remains the most definitive test to

tell you

> what you have and the degree of your disease. Many times, you

hear the few folks

> that had a bad experience and not the many that had an excellent

experience.

> My last biopsy was 6 months ago ..... it was my third in eight

years. All

> were done at the Mayo Clinic in sdale, Ariz. I've had enough

of them now

> that I don't even take the sedative. I've never had any pain or

discomfort

> ..... just a sense of pressure when they take the biopsy.

>

> My two cents worth! Go to a medical center that does this type of

biopsy

> every day ...... not once a month and make sure they use an ultra

sound to guide

> the biopsy. We are all dealing with a disease that is treatable

and we are

> responsible for our own health ..... get to a clinic that knows

this disease

> and treats it every day. If you can't do that, get as

knowledgeable as you can

> on your disease because you may have to become the expert for

your doctor.

>

> I hope this helps a newbie ..... get your biopsy.

>

> Rick, male, 63, PBC/AIH, stage 1, '98

>

>

>

[Guest guest]

Same here, except that they gave me lunch. At that point I was

allowed to roll to one side and had to eat it laying down. :-)

Jaana

susan wrote:

> I was awake) What i hated was lying there afterwards for hours and

> no food all day. The doctor was running late so I was still down

> until 5 in the late afternoon.

--

Jaana Fogl

jfogl at saunalahti.fi

*************************************

* I am a Bear of Very Little Brain, *

* and long words Bother me. *

* - Winnie the Pooh *

*************************************