can someone tell me the stages of PBC? my doctor just seems to "not hear" when i ask about it.

[Derann]

[Tumbleweed41]

Derann

Your Dr. probably doesn't have a clue. - -:((

The best thing that I can tell you to do is "google" it. You will come up with

a lot of technical language but there are several sites out there that will spell it out in plain language.

Wish I was more help but I really think that is your best way to go.

Good luck. "Happy hunting". -

[kosy2]

"Stages " are a pathological diagnosis (what you see on liver biopsy) and not a clinical diagnosis.

[EAJSWW]

Kosy is right. Also few Dr's in the UK now often routine Liver Biopsies as they are seen to be of less and less value.

So many people with PBC are hung up on blood numbers and stages when in reallity, both can be open to discussion .

Unless you have another suspected problem (some of us have overlap syndrome where AIH can be treated fairly effectively) There is probably little reason for you to have a biopsy. The treatment will be the same regardless of what biospy says.

I believe that transplants are carried out when quality of life becomes too low, this might not be the same 'stage' as another person needing a transplant.

Derann, maybe you should write your questions down and give them to him, also telling him you don't feel in control of what is happening. Good doctors will want to share your care with you as a patient, and he might just be unaware how upset you are. It really isnt always a case that doctors don't have a clue, we have to remember that doctors have to be masters of all, and yes of course they simply can't know everythng, but especially in the UK time limitations for consultations often mean they are chasing their tails. Be careful if you Google unless you already have a good idea what you are looking for becaue you can find a lot of very out dated material. There might be some good info out there, but you have to know what is correct and what is not. many people I speak to have read shocking things on various websites and forums.

I would suggest instead that if in the UK, you make sure you read your PBC comendium and read your Bear facts regularly, you should make sure you are a member of the PBC foundation and ring them and ask the questions that worry you. You will be ensured of the most uptodate information as they have experts who work alongside the charity.

All the best.

[Hidden]

I am in the UK and I asked my gastro consultant what stage I was at and he did quite openly tell me that he hadn't a clue what I was talking about, seems like they are a US thing. I did then get a copy of my medical records and it shows I was diagnosed with severe PBC what ever that is.

[dizee]

Hi there. I have just received a great dvd from LiverNorth (LIVErNORTH) from

County Durham in the UK. All they ask is donation to cover costs and postage. to keep up production of this informative disc.Found it very helpful and they have a real focus on PBC locally as in the north of england, 1 in 700 of the population (mostly women) has it! hope this helps.

[Oidra]

Stick with the PBC Foundation. Telephone them and talk you through your worries.

Oidra

[Derann]

thanks every one for your help, i have been in hospital that many times this year that life really doesn't seem worth living, i would gladly take whatever to get out. this is not a life it's just an existence. so what is the point? the pain is that bad sometimes that i now have to get morphine on my repeat prescriptions. sorry if i upset anyone.

[Hidden]

As far as I gathered months before PBC was mentioned and the AMA test I had in 2010, I did find out on the net - I found textbooks more viable - there is a doctor in US, Dr. Palmer and she is featured on a video with a patient called Emily who has just been diagnosed with PBC via the AMA test. This doctor then informs the patient that she needs a biopsy to stage PBC.

We get talked thru the results of the staging and this doctor says that it is done at one stage above for some reason.

I do think it is an American routine as here in England, staging of PBC has never been mentioned to me nor have I asked as I don't want to know to be honest.

I myself shall be using my own feeling with regards to PBC and also alongside the blood tests to 'stage' myself. At the moment it is looking pretty good.

I once saw a programme on tv before I was diagnosed with PBC (only 2mths prior to the AMA test) and there were 2 participants on the programme, one an overweight man and the other an alcoholic. Both were informed just how their livers were at the time via an ultrasound scan they had on air. To me that was telling me that a professional does know pretty accurately via an ultrasound just how the liver is at the time. Mine was said to be pretty much normal at the time with slight inflammation - I presented with itching and fatigue, they are still, 2yrs on, the only symptons I have but the fatigue isn't too regular like the itching. (Out of interest the overweight man was informed he had a fatty liver, the alcoholic was at cirrhosis stage.)

As Tumbleweed41 states, the doctor probably hasn't a clue as my original GP didn't even know a thing about PBC until he had to tell me the hospital doctor had wrote and he had to tell me the diagnose and prescribe urso. I had more info on PBC by then that he did!

I know if I was informed by a doctor now I was being requested to have a liver biopsy just to stage PBC I'd definitely not accept myself as I don't see the point personally.

[kosy2]

The thing about PBC is that it is so UNPREDICTABLE. Person 1 can be stage 1 and progress to end stage liver disease in 3 years and person 2 can be stage 4 and never progress to end stage liver disease. And for now the doctors have NO way to predict how it will go.

This is what is drives me crazy - the not knowing.

As far as transplant - not everyone that needs one gets one. Because of my obesity I would NEVER ever get on the list.

[EKHM in reply to kosy2]

Hi, when i was first diagnosed they said blood tests showed it to be severe, but when i got my first biopsy done it showed it to be very mild, liver looked normal. Then second boiopsy diagnosed AIH as well. But i still do not know which stage i am at, or if it has progressed much, will ask again on next visit to consultant.

Take care everyone.

[kosy2 in reply to EKHM]

Blood tests are a snapshot of how your liver is working at the time of the test. It can change from day to day. My LFT's are always up and down - sometimes even within normal limits.

With PBC the biopsy is viewed in stages. You can show none, one or all stages at the same time depending on where the sample is taken. (My biopsy showed stages 1,2,and 3 from 3 different samples)

Nowadays, with PBC, +AMA and abnormal LFT's = a dx of PBC almost 100%. So there is a lesser need for biopsy to confirm PBC.

Because treatment is toward symptoms another reason biopsy and/or stage not need.

Again, the stage you are at today does not relate to how long you have before a transplant is needed.

From the research I done, BILIRUBIN levels are the best indicator of how well your liver is working.

[BECCAFROMWISCONSIN]

My gastro dr told me I was at stage(4) 2years ago on urso 3x daily,the only high number of all my tests was ALK PHOSPATASE normal is 38-126 and mine was at 205 everything else was all in normal range,had a liver biopsy and thats how they came to that conclusion, my DR has me seeing him once a year is this right.

[kosy2 in reply to BECCAFROMWISCONSIN]

Seems right to me. What, if any, concerns might you have?

[EAJSWW]

I was talking to Robert yesterday from the foundation and he confirms this....

There are NO stages of PBC, the are stages of liver damage BUT a liver as large as it is can have areas within which show varying levels of damage, so one are could have a patch of chirrosis, where 80% of the liver could be fine or there could be scattered patches of fibrotic tissue and 1 patch of chirotic tissue. Hence if you biopsy, You could get a very misleading pictre dependng on which tiny bit of tissue was taken, and also why biopsies are being done less frequently and only when other concerns necessitate this test..

I would agree that the Foundation IS your best port of call for information on PBC, the doctirs who work closely with the foundation are LEADERS in the fiels and are those involved in the most uptodate research. The information you will get from them will simply be the most up to date information there is.

[kosy2]

Some more information I found on the PBCer web site - Hope it helps.

Question

I am stage 3 PBC, and sometimes have pain in the liver area, but this is my only symptom. When should a person in stage 3 be evaluated for the transplant list? What is the criteria?

Answer

Stage 3 disease is a histological definition, i.e., this is purely the appearance of the liver on a liver biopsy. If occasional liver pain is your only symptom, it may still be early for you to undergo a transplant evaluation. Liver pain is a well-recognized symptom in PBC. The cause is not clear, but it may include stress on the thin capsule that covers the liver which we know is rich in nerve fibers and very sensitive to stretching. However, many patients may have varying amounts of liver pain or discomfort without evidence of advanced liver disease. The usual indications for a liver transplant evaluation include abnormal levels of serum bilirubin, serum albumin or prothrombin time. also, any symptoms of edema, ascites (fluid in the abdomen) or altered nervous system function known as hepatic encephalopathy. Patients with severe symptoms of disease including itching, pain or fatigue may also qualify for an evaluation, even though they still have early disease by the other usual criteria.

Nancy Bach, M.D.

Specialty Liver Diseases

The Mount Sinai Medical Center

[teach_2_learn]

I found another website that was informative. There was a pamphlet at my specialist's office. Might help. pbcers.org