Confused about pbc and cirrhosis

[KevinHall10_]

I am confused. I am in stage 2 of pbc. What is the difference between stage 2 of cihorris and stage 2 of pbc. If i do get to stage 4 of pbc is that when u seek help for a transplant with pbc? Don't mean to sound confusing , but i am just not gettig it. Thanks

[ninjagirlwebb]

Histologically, PBC is classified into four stages. Stage I is referred to as the florid duct lesion or nonsuppurative destructive cholangitis and is characterized by mononuclear inflammatory cells surrounding a small bile duct. In stage II, there is proliferation of small bile ductules. Stage III is characterized by fibrosis or scarring. Stage IV is cirrhosis. These histological stages demonstrate the progression of the disease from destruction of the intrahepatic bile duct to fibrosis and cirrhosis.

Cirrhosis is stage 4 of pbc & is a subset of pbc progression. Within the cirrhosis condition are stages to describe its particular progression.

The 4-stage system is based on the presence or absence of specific complications of cirrhosis. These complications develop because of failing liver function and/or blockage of blood flow through the liver caused by extensive scarring within the organ.

[KevinHall10_ in reply to ninjagirlwebb]

Thank you, so what ur saying, no matter if it is pbc or cihorris stage 4 is is bad.

[ninjagirlwebb in reply to KevinHall10_]

Yes, that is the case.

Stage IV for PBC is cirrhosis.

Within cirrhosis there are also stages 1-4. Stage 4 is the most acute.

Most PBC patients who are early responders to urso won’t progress to those stages.

[ninjagirlwebb]

Stage 1 Cirrhosis

Stage 1 is the earliest stage of cirrhosis and is characterized by the absence of two significant complications known as varices and ascites. Varices are dilated, ballooned veins. They are most often located in the lining of the esophagus and/or stomach. Acsites refers to an accumulation of fluid in the abdominal cavity. Both varices and ascites develop primarily because of obstructed blood flow through the liver, a condition known as portal hypertension. While people with stage 1 cirrhosis have extensive liver scarring, it is not severe enough to cause substantial portal hypertension and its complications.

Stage 2 Cirrhosis

Stage 2 cirrhosis is marked by the development of esophageal varices, due to worsening portal hypertension, but without the presence of ascites. While the development of esophageal varices indicates worsening cirrhosis and an increased risk of dying in the next 12 months, stage 2 cirrhosis is still considered compensated cirrhosis. There remains the potential for at least partial reversal of liver damage if the underlying cause of cirrhosis is eliminated or cured.

Stage 3 Cirrhosis

Stage 3 cirrhosis is marked by the development of ascites, with or without the presence of varices. The volume of ascites varies from being detectable only with imaging tests, such as abdominal ultrasound, to obvious bloating of the abdomen. The development of ascites signals worsening portal hypertension due to advancing liver scarring and deterioration of liver function. Stage 3 cirrhosis signals decompensated cirrhosis, meaning the liver is failing. Once decompensated cirrhosis develops, liver scarring is irreversible and evaluation for liver transplantation is generally recommended. A variety of signs and symptoms may be present with stage 3 cirrhosis, including:

-pale and/or yellowish skin

-weight loss and loss of appetite

-shortness of breath

-extreme fatigue

-persistent, widespread itchiness

-swelling of the feet, ankles and lower legs

-wasting of the muscles of the arms and legs

Stage 4 Cirrhosis

The defining feature of stage 4 is gastrointestinal bleeding, usually from ruptured varices in the esophagus or stomach. This type of bleeding can be immediately life threatening if not controlled. Even if bleeding stops or is medically controlled, however, individuals with stage 4 cirrhosis still face a high risk of dying within 12 months. Persons with stage 4 cirrhosis have end-stage liver disease and urgent evaluation for possible liver transplantation is necessary. Signs and symptoms that might develop include those that may occur with stage 3 cirrhosis as well as others, such as:

-confusion, personality changes and/or extreme sleepiness

-hand tremors

-reduced urination, which may indicate kidney failure

-high fever, signalling infection of the abdominal cavity

[GhostHunter in reply to ninjagirlwebb]

That was an awesome explanation... thanks

[KevinHall10_ in reply to ninjagirlwebb]

Thanks again

[Oscardog in reply to ninjagirlwebb]

Hi

This info above is on all the sites and it has now been deemed to be not accurate....I thought at first it was accurate but since having spoken to a consultant liver surgeon (as well as my own consultant) , he explained that the information doesnt mean very much. if I was at stage 3 as indicated by some symptons like varices and ascites which I have, my life expectancy would not be given as between 6-14 years or would I be was marked as low grade stage 2.

[ninjagirlwebb in reply to Oscardog]

So does that mean given your symptoms which would classify you as stage 3 as per the research but your own doctors are telling you you are a low grade stage 2??? I think the research is just generalizations so we can get a sense of what each stage signifies. Ideally each person should be evaluated based on his/her total history & it would be more accurate than the generalizations. But research is not about a specific case rather generalizations of many cases. That is how I would interpret it.

[ninjagirlwebb in reply to Oscardog]

Do you have new research that supersedes the above? I would be interested in reading it.

[Ktltel]

Hi KevinHall10_,

Well, I've read what your asking in this post as well as the responses by ningagirlwebb. I'm not sure why you want my take on things, or did I misunderstand something you posted on another thread?

I actually learned some things from ningagirlwebb's responses to you. If I'm getting it all correctly, so, they're stages of PBC and Stages of cirrhosis as well. Different symptoms and issues accompany those stages in both diseases.

Being that I'm supposedly in stage 1, (I say supposedly because I've never had a Fibroscan only a biopsy) I can't really add to the fine research and explanation that ningagirlwebb has supplied us all with here. This is all a learning experience for me as well.

Stella ❤

[gwillistexas in reply to Ktltel]

Ktltel...she may have asked you because you have a caring & encouraging way with your words😊

[Ktltel in reply to gwillistexas]

Awe, I hope I wasn't too disappointing not understanding anymore than I do. ❤

[gwillistexas in reply to Ktltel]

No ma’am, not at all 🦋 most of us are still learning.

[KevinHall10_ in reply to gwillistexas]

Thank you

[KevinHall10_ in reply to Ktltel]

Gwillistexas was correct.

[Hidden in reply to Ktltel]

Stella, PBC and cirrhosis are not two different diseases - Cirrhosis is not a disease, it is an end product of chronic damage to the liver (in this case chronic damage from PBC).

[Ktltel in reply to Hidden]

What is Cirrhosis disease?

Cirrhosis is a complication of liver disease which involves loss of liver cells and irreversible scarring of the liver. Alcohol and viral hepatitis B and C are common causes of cirrhosis, although there are many other causes.

Thank you DianneS. I got the above off a webpage on the internet. I guess this is why it's all so confusing.

Stella ❤

[Hidden in reply to Ktltel]

Stella, it is complicated and confusing when first researching things, any things

You ask "What is Cirrhosis disease?" (or do you? Is that an actual question you are asking or just the heading of a paragraph?) - the first 7 words tells you what cirrhosis is, it is a "complication of liver disease" so it follows that it is the final complication/stage in the progression of PBC.

[Ktltel in reply to Hidden]

Hi DianneS,

That question... What is cirrhosis disease? Is the beginning of the article. I just cut and pasted that. But it's not the only article I've read that calls cirrhosis a disease. Even my hepatologist calls it a disease. But, I understand what your saying. One thing begets another, one thing causes the other. 👍

[Hidden in reply to Ktltel]

You know, I don't even consider PBC a disease, it is described as an autoimmune condition which attacks the bile ducts within the liver, so the autoimmune system isn't even attacking the liver, only the bile ducts - it's the destruction of the bile ducts that lead to fibrosis and then to cirrhosis, so not a disease of the liver, but an attack by the autoimmune system.

[emerich in reply to Ktltel]

Hi Stella

I tend to think of cirrhosis as liver damage and pbc as liver disease. I know it's an auto immune condition but for now it only affects my liver, thankfully, so that's how I think of it.x

[Ktltel]

KevinHall10_

How are you feeling tonight? Sorry I didn't have anymore insight or knowledge to share. Ningagirlwebb has done her research. Lots of good information there.

You know there are several on this forum that are in stage 4 PBC. What's strange is that even in that stage everyone is different. Some experience a lot of symptoms and others, even in that stage, for some reason don't. The more I learn about this disease the more I realize there's just no rhyme or reason we're all different. All we can do is take the best care of ourselves that we possibly can, take our meds, and try to make the best of every day.

Stella ❤

[KevinHall10_ in reply to Ktltel]

Thanks, its still hard to think of thesr being two disease, but both ending in cirrhosis. Hopefully, I'll get it straight in my brain..lol

[ninjagirlwebb in reply to KevinHall10_]

To clarify, they are not 2 separate diseases. Cirrhosis is the scarring of the liver caused by chronic liver conditions such as pbc. Other liver conditions can also cause cirrhosis if left untreated such as NASH, alcoholism, hepatitis etc...

PBC in other words left untreated can progress to cirrhosis.

[gwillistexas in reply to ninjagirlwebb]

PBC is not Cirrhosis. Yes, left untreated can turn to Cirrhosis. So my thoughts are, as long as inflammation & fibrosis are controlled & contained in the ducts it keeps liver from being cirrhotic. And you know as well, not everyone with PBC fibrosis will go on to Cirrhosis.

[Hidden in reply to gwillistexas]

gwillistexas, I'm not too sure that "inflammation & fibrosis" can be "controlled & contained in the ducts" indefinitely.

I, for example, was diagnosed 29 years ago at Stage 2, I have had near normal (and stable) LFTs for 25 of those years (this was when I started taking Ursofalk), yet here I am Stage 4 PBC with many of the 'complications' associated with Stage 4 cirrhosis. Just as an aside, my LFTs are the same now as they were 25 years ago.

As ningagirlwebb has indicated, cirrhosis is the end result of chronic damage (for whatever reason) to the liver, and as PBC has no cure, and is a progressive condition (albeit slower in some than in others) I really can't accept the notion that "not everyone with PBC fibrosis will go on to Cirrhosis" stage. Surely that depends on a number of factors, one being age and stage of PBC when first diagnosed, another would be how well they respond to the meds.

[gwillistexas in reply to Hidden]

True & although one is the end result of another, PBC & Cirrhosis are not the same. I totally understand inflammation cannot be controlled forever. But to say they are the same, they may as well have not changed the name from Cirrhosis to Cholangitis.

[Hidden in reply to gwillistexas]

No, you are correct, they are not the same, but I don't think anyone has said they are.

Cirrhosis is not a disease so does not develop on it's own accord, something chronic has to produce the scarring (cirrhosis) in the first place, and in our case it is PBC.

From my understanding the 'name change' was due the the association of cirrhosis with alcohol and drug abuse, which made it difficult to raise funds/grants for research.

[gwillistexas in reply to Hidden]

I understand all of the above about why the name was changed. I also understand Cirrhosis is not PBC until my liver is scarring, and at this time it is limited to my duct. This conversation could go for hours. Nobody is trying to prove another wrong.

[gwillistexas in reply to Hidden]

And if you’ll notice I said “as long as inflammation & fibrosis can be controlled”. I did not say we will never be cirrhotic.

[Hidden in reply to gwillistexas]

Yes I did notice that, but I was addressing the "can be controlled and contained in the ducts it keeps liver from being cirrhotic" aspect, which seemed to me to indicate that you believed that cirrhosis could be prevented.

[gwillistexas in reply to Hidden]

No that’s not what I said. I said “as long as it can be controlled “. That’s probably why so many live a long life, because their meds kept it under control.

[Hidden in reply to gwillistexas]

Yes, but even with the "as long as it" added it suggests the same thing.

While the meds do slow the progression down in most cases I think many are living with PBC longer because they are being diagnosed earlier - pathology tests etc. have improved greatly since I was first diagnosed.

It took 2.5 years for my diagnosis (I'm in Australia), and pretty much the same time for my cousin's diagnosis of PBC (she is in the US) 29 years ago, we were both told we were in Stage 2 after our biopsies then. Both our journey's have been different, I'm 'cruising' along in Stage 4 and my cousin received a transplant nearly 4 years ago, yet both our LFTs were near normal, which indicated we were responding well to our meds.

[Sachin1234 in reply to Hidden]

You are one of the luckiest person that you had your 25 years without any problem before! It is my 3rd year running and I have to go to so many other problems like hypothyroid,sjogerns, reactive hypoglycemia, and possible lupus..sucks tho im cherishing my life keep fighting to live one after another beautiful day 🤗

[Teri8672 in reply to Hidden]

Thanks for letting us know it can be longer then 15 yrs what I had been told in the past I’m 15 yrs diagnosed through biopsy allergic to ursidol and have many other autoimmune disorders. I am being seen at Ucsf. My liver specialist at Ucsf really puts things into prospective. My mother passed from this disease along with her mother. But they also drank and were never diagnosed with PBC it was unknown back then.

[Sachin1234 in reply to ninjagirlwebb]

Everything you are trying to explain here are from websites..you lack the understanding what you reading so please do not mold the others words in yours rather copy and paste would be easy to understand..do you have pbc?

[KevinHall10_ in reply to Ktltel]

Hi Stella, i had to call my dr and let him know my upper side by my liver cramped all night. The dr. At university ordered to get a cbc, cmp, and pt. labs. So , i will find out tommorrow what going on (I HOPE) its scary, this desease. I rarely have an appetite. No fever or jandice, and yes i feel comfortable texting you, other wise i kind of feel like im whining.

[Ktltel in reply to KevinHall10_]

Oh boy, sorry to hear of your pain that's going on. Hopefully your tests will give your doctors the right way to go.

Keep us posted.👍I'll be interested to see what they say.

Stella❤

[KevinHall10_ in reply to Ktltel]

Test came back okay,alk little high, to be expected. Im just resting, very rired. Will start back to the gym tommorrow. Swimming rekaxes me. Have a food evening.

[CBDnews in reply to Ktltel]

My hepatologist is associated w/ a teaching hosp and does not use stages to describe Cirrhosis. He uses compensated and uncompensated? Uncompensated is when ascites, varies etc occur. I find it hard to relate to as far as progression. Keeps you thinking you are waiting for the next symptom/complication. Dr is just treating symptoms and only treatment seems to be nutrition and exercise. Like who feels like exercise when you are too tired to do basics of daily living???:(. Feel like losing the battle.

[Teri1755]

Im with you Kevin I don't get it either! I was just diagnosed in February at stage 4 cirrhosis and autoimmune hepatitis. It's all confusing to me too.

My hepatologist said my liver is damaged but still functioning. It's all so scary. And the doctors don't really explain anything.

[Oscardog in reply to Teri1755]

I think you mean PBC stage 4 which is the start of cirrhosis stage 1....stage 4 cirhossis would mean your liver is not working and you would be very ill and certainly would have been on a transplant list as urgent. Please ask your doctor to explain fully so you understand and are not so scared . Reading info on the net is not useful for you right now! Good luck

[Teri1755 in reply to Oscardog]

Thanks I appreciate that..

My Gasterologist at first diagnosed me with PBC stage 2 and autoimmune hepatitis. In Feb I was referred to a Hepatologist, after blood work to check my liver enzymes, a CT Scan, he diagnosed me with full cirrhosis, stage 4 and AIH. My liver is totally damaged but for right now it still is functioning which is awesome.

I am going to need a LT in the very near future. I am very sick every day but it's manageable with my meds, URSO and predisone. The good news is my numbers are coming down, which I'm so happy about, and my eyes and skin aren't yellow at the moment.

I'll be ok though.. I just went on medical leave to take care of my health. It's all good...

Stay strong and thanks for the advice.

[Teri1755 in reply to Teri1755]

My doctor thinks I've had PBC for nearly 10 years without treatment or diagnosis, but I blamed it on my ITP and splenectomy for the reason for being so sick.

When I finally went to the doctor bc my symptoms were constant it took another 2 1/2 years to diagnosis me. And by that time my liver was already damaged.