PBC

[Guest guest]

About 4 years ago, when I first became aware of my problems with my liver (after a biopsy,etc ) my first symptom was lots of itching with re splotches all over my back and face. I looked terrible, and felt worse. I messed around with that for a while, was diagnosed to have "discoid lupus", also and autoimmuno disease, and started the urso (ursodiol) and 4 capsules of Milk Thisle medications, and after a while was put on prednisone for 2 weeks.

The splotches disappeared, the itching subsided, but I have no idea if it was the liver medication that helped seriously or if it was the prednisone that stopped the itching or what. Since then I do have some days that are worse than others for itching, but nothing like those months that I spent scratching and going crazy trying not to scratch. I did not know of blood test, bilirubins, or LFTs at the time.

I will have to look at my reports, to research what all they did test me for at the time!. I think I do have that stuff, I try to keep the paperwork even if I do not understand it all!

I hope you let us know what your hepatologist says.

Thanks for sharing

Clara from OR ( now visiting in NH)

-------------- Original message -------------- I've been itching a lot lately. Haven't had this symptom since started on Urso 18 months ago. I called my hepatologist but haven't heard back from him yet. Any ideas as to why this might be happening again ie. increased LFT's?

[Guest guest]

Hi Sandy,

It sounds like your husband is in denial about your illness.

I think that you're right hat he's frightened and doesn't want to

accept the fact that you're ill.

You can go to the PBCers website http://www.pbcers.org for

information about the disease.

By educating yourself you can educate your doctors.

Some cases of PBC progress very slowly. I know a woman who has had

PBC for over 20 years and is still in the first stages. You won't

necessarily need a transplant.

Where is Yelm?

Best wishes,

, 54 y/o

Amsterdam, Netherlands

transplant, 18 Mar. 1990, PBC

>

>We live in Yelm, raise horses and have two daughters. I am 53 y/o.

>

> I hope this tells you about me. I really don't know how this will

>play out as my doctor is good but is attitude frightens me.

>Yesterday he told me we would just monitor blood work with the

>medication and eventially have a transplant. I really think we need

>some more study of this disease in our area as it seems like not

>many doctors know much about it.

[Guest guest]

Wow Sandy...you AHVE been through so much. If you don't like you doctor, then find another, but other than monitoring you blood, I don't know if there is much else to do. That is what my doctor does...we just keep on doing labs to keep an eye on what the blood is doing and biopsies every so often to see how the liver is fairing....good luck!

debby

[ ] PBC

Well I will tell you about what is going on with me as you have asked.One May morning I got up for the day, made the mistake of blowing my nose. This led to a bloody nose that went for 2 1/2 hours and an urgent care visit. With this visit, my life changed quite rapidly. A few days late my doctor called me and told me to come in right away. When I got in, he said my blood work was off and I needed some more tests right away. When all was said and done after a liver biopsy, I was diagnosed with Primary Biliary Cirrohosis. My doctor didn't know the stage so last week I called the specialists office and got the stage. It is 2/3. I have Fibromyalgia as well and degenerative spine disease. I'm tired all the time but don't have time to be sick. I have spent the last 2 years nursing my husband back from the dead litterally. He has congestive heart failure from a virus. He arrested last Dec. but my daughter was able to keep her head about her and defibrilate him. He is doing very well, the doctors are quite shocked actually but he doesn't do well when it comes to me being sick. He will go out of his way to ignor it, and has no problem telling me it is ok to cancel my appointments. He is frightened I'm sure but I have taken care of him always and I won't quit not. I was a nurse until 15 years ago.We live in Yelm, raise horses and have two daughters. I am 53 y/o.I hope this tells you about me. I really don't know how this will play out as my doctor is good but is attitude frightens me. Yesterday he told me we would just monitor blood work with the medication and eventially have a transplant. I really think we need some more study of this disease in our area as it seems like not many doctors know much about it.

No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.1.362 / Virus Database: 267.13.4/175 - Release Date: 11/18/2005

[Guest guest]

LIZZY,

I ALSO HAVE WHAT YOU HAVE ,FOR THE SAME YEARS,I HAD A VERY HARD TIME

ADJUSTING BUT JUST GOTTA DO IT .IT'S HARD WHEN YOU GET PUT ON ALL THE MEDS. JUST

COPING IS HARD TO BEGIN WITH,LOT'S OF CHANGES ,

I WANT TO LIVE AND WITH GOD'S HELP EVERYDAY IS A BLESSING .ANOTHER THING I

HAVE GAINED MANY FRIENDS FROM THE WEBSITE AND THE SUPPORT GROUPS, THEY ARE LIKE

MY FAMILY, I LOVE THEM ALL..

MERRY CHRISTMAS TO ALL .FROM SUE IN GEORGIA CELL#912-657-0687,FEEL

FREE TO CALL,,,,,,,HUGS TO ALL

lizzysamo <ajbrantley@...> wrote:

Is there anyone that lives in central Ga.with PBC? I have had stage2

for about 6 yrs now and there are alot of questions I want to ask.Also

I would like to talk to them on the phone.It has been really hard for

me because my family don't understand what is going on with me.I also

have Sjogren's Syndrdome and early stages of encephalopathy.My husband

trys

hard to understand and is very supportive of me.The family only knows

what I have told them about this,they have't done any reseach on these

problems.thank you.

Dublin,GA.

[Guest guest]

Must be getting through as I received it,

Good luck with your new doctor! Keep searching if you are not satisfied.

Clara from OR

[ ] PBC

I have posted a few times on this messagr board and was wantering

if my post was getting thur.I've had pbc for adout 4 yrs. now

and are having alot of problems.Going to a new Dr. next Tues.

Hope he will be able to help me.Someone please let me know if

this post is getting thur.Thank you.Addie Ga.

[Guest guest]

Encephalopathy is my major problem right now. I had to quit my job as an R.N.

and go on medical disability because I couldn't keep up with the hectic pace.

And now it is

obvious at home, too. I misplace things and am not as organized as I used to

be. It can be frustrating. Enulose doesn't seem to help enough. About the

Sjoorgen's syndrome- my eye doctor told me to use artificial tears 4 x a day or

I could develop eye diseases later on.

lizzysamo <ajbrantley@...> wrote:

Thank you'll answering my message.My Dr. not telling me no more than

what he thinks I need to know,so that is why I 'm changing Dr.

I have Sjogrens syndrome and encephalopathy,my stomack,legs and ankles

are swelling real bad.I also itch and hurt alot in my right side.

I'm taking Urso and Enulose Syp.Some times I feel like I'm all

by my self,I know that there are other people out there with the same

problem like me.I don't want a pity party,but my family don't understand

what going on with me.With my fuzzy mind it's hard to run the house

and pay the bills.When I read about other people problems I feel like

I don't need to complain about mine.I did't mean to unload my problems

on you'll,I guess I needed to tell someone who understand.

Thank you for listing.Addie-Ga.

[Guest guest]

Hi Jeannie,

I'm assuming that with mentioning bear bile, you might have PBC. You're

symptoms are similar to most but often people just find out when they haven't

had any - just in

routine bloodwork. Welcome to this group-you'll find it helpful. Can't think

of anyone from Iowa-I'm sure someone will surface. I'm a Missouri gal.

freejessicaloveslord <freejessicaloveslord@...> wrote:

Hello out there......I was dx in march ,some days I am sure its a bad

dream.At night I know it is,itching my left leg off makes rest comes

less often.Can't sleep on the right side ,liver says forget it.bear bile

is a big joke for friends and self,helps lighten the heavy load.I would

like to know if there are any women in Cedar rapids Ia or there abouts?

Any information is well and thank you......jeannie

[Guest guest]

It is such a blessing when we find out how much our family's will

do for us. You are truly blessed.

I also have Sjogens and it affects my eyes the worst. I have to use

Restasis 2x a day or they drive me crazy. Even then I use other drops

through out the day.

I hope all goes well with your next appointment.

[Guest guest]

First of all, I have PBC and know the fear you have, I encourage you to wait for

the test results before you let the panic set in. Second, PBC today is NOT what

it was years ago, and I presume that's when your Aunt had it. There are

medications now that slow down an already-slowly progressive disease. If you

have it; if it was caught early then drs say you won't die from it. You don't

say what symptoms you have.....there aren't many. Today PBC is usually found by

rountine lab tests, when there are elevated liver enzymes. Then further testing

for different antibodies is done. If you have PBC , go to www.pbcers.org

you will find the greatest support group there, many who have lived years with

PBC. Some who were diagnosed late and have already been through liver

transplant. They are very informative, friendly, and supportive. I will pray

that you don't have PBC, but if you do, try to stay positive. You can have a

long life, thanks to the new drugs and early detection.

Patsy (63) AZ

DX 2005 Stage 1 PBC

AIH/SLE/RA

[Guest guest]

, are you part of the PBCers? If not, go to www.pbcers.org and check them

out. They too are an excellent group and they ALL have PBC. Also, these

members are very involved in finding a cure.............and supporting one

another.

Patsy (63) AZ

DX 2005 Stage 1 PBC

AIH/SLE/RA

[Guest guest]

Thanks . My first symptom was terrible itching of my palms and

soles. It was so bad I started carrying around a little brush to

scratch 'em. Now I have decreased appetite, along with some swelling

of ankles. My abdomen is getting a bit bigger too, although I do not

eat much. My liver function test was high. Itching has increased to

being all over now. I am on Zyrtec for the itching and it does seem

to help. I am not on any other meds. All other blood tests they did

came back okay.... thyroid, glucose, hepatitis B and C, cholesterol.

I read somewhere online that if untreated, usually by the 7th year

the liver will be damaged so much that a transplant will be needed.

Was that true with you, ? My aunt had the transplant. She

lived longer than they thought she would after the transplant. I

just have it in my mind that if I am actually diagnosed with PBC it

is just a death sentence. I cannot imagine going through everything

my aunt did, and then dying too young.

What is a certain test, besides a liver biopsy, that can be used for

positive verification that it is PBC?

Thank you so much.

Amy

> Hi. I am new to this group. I am currently going through

testing. My

> aunt had PBC and I am having the same symptoms she started out as

> having. She went through the ringer trying to find a dr. who took

the

> time to diagnose her instead of saying it was all in her head.

Since I

> know some of her history I am talking to my dr about it and trying

to

> speed up the testing process. I am almost positive that it will

turn

> out that I do have Primary Biliary Cirrhosis, and it terrifes me.

Is

> there anyone here who has gone through the same that I could talk

to?

> Thanks so much.

>

>

>

>

>

>

>

[Guest guest]

One very definitive thing for PBC is anti-mitochondiral antibodies. When you say

that

your liver function test was high, which parts do you mean? I had no symptoms

when

I first tested positive. My alk phos was high when my M.D. drew some normal

labs &

then he ran more tests when I reminded him that my mother had PBC.Then I

didn't have symptoms for about 9 yrs. And they are very different from my mom's

were.

Have you seen a gastrenterologist or hepatologist? My mom is ten years post

transplant & doing fine - just has normal aging problems......

Keep me posted & let me know if you've learned anything new.

princessjordynsmommy <princessjordynsmommy@...> wrote:

Thanks . My first symptom was terrible itching of my palms and

soles. It was so bad I started carrying around a little brush to

scratch 'em. Now I have decreased appetite, along with some swelling

of ankles. My abdomen is getting a bit bigger too, although I do not

eat much. My liver function test was high. Itching has increased to

being all over now. I am on Zyrtec for the itching and it does seem

to help. I am not on any other meds. All other blood tests they did

came back okay.... thyroid, glucose, hepatitis B and C, cholesterol.

I read somewhere online that if untreated, usually by the 7th year

the liver will be damaged so much that a transplant will be needed.

Was that true with you, ? My aunt had the transplant. She

lived longer than they thought she would after the transplant. I

just have it in my mind that if I am actually diagnosed with PBC it

is just a death sentence. I cannot imagine going through everything

my aunt did, and then dying too young.

What is a certain test, besides a liver biopsy, that can be used for

positive verification that it is PBC?

Thank you so much.

Amy

> Hi. I am new to this group. I am currently going through

testing. My

> aunt had PBC and I am having the same symptoms she started out as

> having. She went through the ringer trying to find a dr. who took

the

> time to diagnose her instead of saying it was all in her head.

Since I

> know some of her history I am talking to my dr about it and trying

to

> speed up the testing process. I am almost positive that it will

turn

> out that I do have Primary Biliary Cirrhosis, and it terrifes me.

Is

> there anyone here who has gone through the same that I could talk

to?

> Thanks so much.

>

>

>

>

>

>

>

[Guest guest]

I'm also very new to this...........just got results of biopsy,,,,,stage

3.....positive for anti-mitochondrial antibodies, but the alkaline

phosphastase and AST and ALt have gone down drastically in the last

two months.............so what does this all mean,,,,what are normal readings?

My ALT went from 75 to 40. Sue

WOOTTEN <lindawootten@...> wrote: One very definitive

thing for PBC is anti-mitochondiral antibodies. When you say that

your liver function test was high, which parts do you mean? I had no symptoms

when

I first tested positive. My alk phos was high when my M.D. drew some normal labs

&

then he ran more tests when I reminded him that my mother had PBC.Then I didn't

have symptoms for about 9 yrs. And they are very different from my mom's were.

Have you seen a gastrenterologist or hepatologist? My mom is ten years post

transplant & doing fine - just has normal aging problems......

Keep me posted & let me know if you've learned anything new.

princessjordynsmommy <princessjordynsmommy@...> wrote:

Thanks . My first symptom was terrible itching of my palms and

soles. It was so bad I started carrying around a little brush to

scratch 'em. Now I have decreased appetite, along with some swelling

of ankles. My abdomen is getting a bit bigger too, although I do not

eat much. My liver function test was high. Itching has increased to

being all over now. I am on Zyrtec for the itching and it does seem

to help. I am not on any other meds. All other blood tests they did

came back okay.... thyroid, glucose, hepatitis B and C, cholesterol.

I read somewhere online that if untreated, usually by the 7th year

the liver will be damaged so much that a transplant will be needed.

Was that true with you, ? My aunt had the transplant. She

lived longer than they thought she would after the transplant. I

just have it in my mind that if I am actually diagnosed with PBC it

is just a death sentence. I cannot imagine going through everything

my aunt did, and then dying too young.

What is a certain test, besides a liver biopsy, that can be used for

positive verification that it is PBC?

Thank you so much.

Amy

> Hi. I am new to this group. I am currently going through

testing. My

> aunt had PBC and I am having the same symptoms she started out as

> having. She went through the ringer trying to find a dr. who took

the

> time to diagnose her instead of saying it was all in her head.

Since I

> know some of her history I am talking to my dr about it and trying

to

> speed up the testing process. I am almost positive that it will

turn

> out that I do have Primary Biliary Cirrhosis, and it terrifes me.

Is

> there anyone here who has gone through the same that I could talk

to?

> Thanks so much.

>

>

>

>

>

>

>

[Guest guest]

Patsy, I've been to the site but have never done the chat-line (probably

because my

favorite T.V. show are on those nights). I need to do this.

I'm supposed to go Organ Donation/Transplant Day at the Cardinal Game.this

weekend, My mom gets the ticket (having been transplanted ) but gives them to

us. Tickets normally go to post-transplant pts. & family members who lost a

loved one & donated their organs.

There will be lots of speeches & a booth for organ donor cards to be filled

out. It's really quite moving.

Last year, Eckstein won the game with a walk-off homerun which was

really cool because his brother, sister, & father all have had kidney

transplants

Pat Murray <patsy56er@...> wrote:

, are you part of the PBCers? If not, go to www.pbcers.org and

check them out. They too are an excellent group and they ALL have PBC. Also,

these members are very involved in finding a cure.............and supporting one

another.

Patsy (63) AZ

DX 2005 Stage 1 PBC

AIH/SLE/RA

[Guest guest]

Hi LInda,

I've only been to the chatroom once, because I forget (brain fog) and I'm

usually busy getting ready for the next day at that time of evening. I do get

the 'digest' and can communicate with everyone much the way that we do here.

Since I have multiple auto-immune disorders I take all of the information from

the different boards. I think the more communication that we have, the better

informed we will be. Where are you located, and do you mean the AZ

Cardinals????

Patsy (63) AZ

DX 2005 Stage 1 PBC

AIH/SLE/RA

[Guest guest]

The test that came back high is the SGPT. The Dr. 1st tried to blame

it on medication, but I had not been on any meds for several years.

Does IBS happen regularly with PBC? Some websites say it does,

others don't mention it.

I have no other Dr. except for my family Dr. at this point. She will

refer me when/if it is necessary. I will make sure I am tested for

anti-mitochondrial antibodies next and then just take it from there.

Thank you for answering my questions and for listening. So many of

the websites I've searched paints such a bleak picture. It is nice

to find people who are going through it and therefore know what is

going on.... thanks!

Amy

> > Hi. I am new to this group. I am currently going through

> testing. My

> > aunt had PBC and I am having the same symptoms she started out as

> > having. She went through the ringer trying to find a dr. who took

> the

> > time to diagnose her instead of saying it was all in her head.

> Since I

> > know some of her history I am talking to my dr about it and

trying

> to

> > speed up the testing process. I am almost positive that it will

> turn

> > out that I do have Primary Biliary Cirrhosis, and it terrifes me.

> Is

> > there anyone here who has gone through the same that I could talk

> to?

> > Thanks so much.

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

There is no 'when/if it is necessary'. If you have elevated liver enzymes you

should see a gastroenterologist, that person will know which specific tests you

need (AMA especially) to determine what is wrong. I strongly suggest that you

TELL your dr that you want to see a specialist. Had I been more assertive mine

could possibly have been found 5 years earlier.

Patsy (63) AZ

DX 2005 Stage 1 PBC

AIH/SLE/RA

[ ] Re: PBC

The test that came back high is the SGPT. The Dr. 1st tried to blame

it on medication, but I had not been on any meds for several years.

Does IBS happen regularly with PBC? Some websites say it does,

others don't mention it.

I have no other Dr. except for my family Dr. at this point. She will

refer me when/if it is necessary.

>

Recent Activity

a.. 3New Members

Visit Your Group

[Guest guest]

Hi, Pat:

Is that right you are at stage 1 PBC?

how to they determine it (liver test,

biopsy...), do you have treatment now?

Thanks

Sherry

--- Pat Murray <patsy56er@...> wrote:

> There is no 'when/if it is necessary'. If you have

> elevated liver enzymes you should see a

> gastroenterologist, that person will know which

> specific tests you need (AMA especially) to

> determine what is wrong. I strongly suggest that

> you TELL your dr that you want to see a specialist.

> Had I been more assertive mine could possibly have

> been found 5 years earlier.

>

> Patsy (63) AZ

> DX 2005 Stage 1 PBC

> AIH/SLE/RA

>

>

> [ ] Re: PBC

>

>

> The test that came back high is the SGPT. The Dr.

> 1st tried to blame

> it on medication, but I had not been on any meds

> for several years.

> Does IBS happen regularly with PBC? Some websites

> say it does,

> others don't mention it.

>

> I have no other Dr. except for my family Dr. at

> this point. She will

> refer me when/if it is necessary.

>

>

> >

> Recent Activity

> a.. 3New Members

> Visit Your Group

>

[Guest guest]

Subject: PBC

> Primary Biliary Cirrhosis (PBC) is a chronic liver disease that slowly

> destroys the bile ducts within the liver (intrahepatic bile ducts). Liver

> inflammation over a period of years may cause scarring which leads to

> cirrhosis. PBC is NOT alcohol or drug related, and it is NOT contagious.

> The name " Primary Biliary Cirrhosis " is somewhat deceiving since cirrhosis

> only occurs in the last stage of the disease (stage 4) after many years of

> inflammation. With early diagnosis and proper medications, most with PBC

> will never reach the cirrhosis stage of PBC.

>

> PBC is also called " Chronic Nonsuppurative Destructive Cholangitis " and

> " Primary Autoimmune Cholangitis. " However, these alternative terms are

> not widely accepted and therefore not in use.

>

> Definition from New American Medical Dictionary:

>

> a.. Primary: First in order of development, most important, arising

> spontaneously.

> b.. Biliary: Relating to or affecting the bile duct system or bile.

> c.. Cirrhosis: An inflammatory disease of the liver associated with the

> replacement of liver cells by fibrous tissue. Passage of blood through the

> liver may eventually be obstructed by the cirrhosis.

> The cause of PBC is still unknown, but it is not alcohol or drug induced.

> Current studies suggest it may involve autoimmunity, infection, or genetic

> predisposition, and does seem to appear more often in certain families.

> Women are affected 10 times more than men, and PBC is usually diagnosed in

> patients between the ages of 35 to 60 years.

>

> Those with PBC usually look extremely healthy, and many are 10 to 30

> pounds overweight. The slight bronze pigmentation of the skin is often

> present in the advanced stage of the disease, and makes the individual

> look tanned. The outward appearances doesn't tell the story of what is

> going on inside their bodies. Even on the transplant list stage, many

> with PBC look healthy. A person with PBC commonly hears comments such as

> " you look so healthy or you don't look sick. "

>

> Upon diagnosis, some doctors may suggest their patient start:

>

> a.. Start a reduced sodium diet and or low fat diet. Nutrition

> b.. In severely damaged livers, proteins may be restricted.

> c.. Drink plenty of water and other fluids such as juice.

> d.. Calcuim and Vitamin D. Calcium is the most common mineral in the

> body and is required for proper functioning of most organs. It is

> particularly needed in the normal development of the bones and teeth.

> Osteoporosis is a bone disease where calcium leaves the bones, causing

> them to weaken, and is commonly associated with PBC.

> e.. Avoid or lower intake of alcohol

> f.. Lower caffeine intake

> g.. Avoid undue stress

> h.. Exercise, if possible. Walking is the most common recommendation for

> exercise.

> i.. Stop smoking

> The above suggestions have been found to be very helpful in liver disease,

> but are common sense considered part of healthy living. PBC Menus and

> meal plans by Norma J. Thiel, RD, Clinical Nutrition Manager Mountainview

> Hospital.

>

> The number of patients being diagnosed at the asymptomatic stage has risen

> dramatically over the past few years due to widespread laboratory

> screening. Typically, the blood lab pattern reveals an elevated alkaline

> phosphatase level with a normal bilirubin. Bilirubin does not increase

> until final disease stage. There are four disease stages of PBC.

>

>

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