Insight or advice needed

[PBC2012]

Hi to fellow pbcer's ....I was told yesterday that I have stage 3 fibrosis?! Any insight or advice would be much appreciated. I know what fibrosis is...

it's the stage 3 I am concerned about.

[kosy2]

A bit more information please. Who told you and what was the source? Are your symptoms worse?

[PBC2012]

The source was from a biopsy and the oerson who told me was my primary doctor ...

Symptoms are new and changing daily.

[kosy2]

what is it about stage 3 that concerns you more than fibrosis?

[KarenRL]

I understand completely. I'm so sorry you are having to deal with a diagnosis like this and that you aren't feeling well.

I just got the same news about 7 weeks ago. The fact that I was just one stage away from stage 4 really freaked me out. I have AIH & PBC and they are both at Stage 3. I asked my doctor what this really meant...could I improve and go back to another stage? What was the worst case scenario? He told me that if I responded favorably to the drug treatment, I could absolutely improve and go backwards in the stages. He also said...worst case scenario....(I think, if the drugs didn't work)...I may be looking at a transplant in about 10 years. Of course, every one is different and he can't really know how quickly the disease will progress. But, I'm sure he was speaking from experience with his other patients...which is really all he can do.

Did you have any specific questions that I, or perhaps someone else one the forum, could answer?

[PBC2012 in reply to KarenRL]

I guess the fact that I still haven't seen my specialist, all the "different " information you find on the internet and the simple not knowing what is actually going on in my own body. My mom had nonalcoholic cirrhosis for seven years, she died three years ago, I understood her disease like it was mine ....this stuff with me ....confuses me and scares me!

[kosy2 in reply to PBC2012]

Was your mom ever tested for PBC?

[PBC2012 in reply to kosy2]

Not that I know of

[kosy2 in reply to PBC2012]

I am thinking maybe she had PBC as well as nonalcoholic cirrhosis. Was it nonalcoholic fatty liver disease? I have that along with PBC - which are 2 disease that lead to cirrhosis. So I am quessing I will get to liver failure quicker than if I only had one or the other.

[PBC2012 in reply to kosy2]

Not sure if it was PBC but it was definetly nonalcoholic cirrhosis ....I also have nonalcoholic fatty liver....biopsy showed stage 1 for that and cirrhosis ...stage 3 for fibrosis

[kosy2 in reply to PBC2012]

I don't understand your answer.

"cirrhosis ...stage 3 for fibrosis"

fibrosis is stage 3

cirrhosis is stage 4

There is a fine line between fibrosis and cirrhosis. If fibrosis is caused by say alcohol and the person stops drinking the liver can heal its' self. Once the liver progresses to cirrhosis it's to late the damage is done.

[PBC2012 in reply to kosy2]

I have stage 3 fibrosis .......I must have misunderstood the other two sample results? I know I am very confused and still cannot see the specialist until august 28th. Sorry about the confusion, when I saw the stage 3 I basically was surprised and scared

[kosy2 in reply to PBC2012]

I know this is very confusing. Here is some more information to help until you see your doctor.

Nonalcoholic steatohepatitis or NASH is a common, often “silent” liver disease. It resembles alcoholic liver disease, but occurs in people who drink little or no alcohol. The major feature in NASH is fat in the liver, along with inflammation and damage.

NASH affects 2 to 5 percent of Americans. An additional 10 to 20 percent of Americans have fat in their liver, but no inflammation or liver damage, a condition called “fatty liver.” Although having fat in the liver is not normal, by itself it probably causes little harm or permanent damage. If fat is suspected based on blood test results or scans of the liver, this problem is called nonalcoholic fatty liver disease (NAFLD). If a liver biopsy is performed in this case, it will show that some people have NASH while others have simple fatty liver.

NASH is usually a silent disease with few or no symptoms. Patients generally feel well in the early stages and only begin to have symptoms—such as fatigue, weight loss, and weakness—once the disease is more advanced or cirrhosis develops. The progression of NASH can take years, even decades. The process can stop and, in some cases, reverse on its own without specific therapy. Or NASH can slowly worsen, causing scarring or “fibrosis” to appear and accumulate in the liver. As fibrosis worsens, cirrhosis develops; the liver becomes seriously scarred, hardened, and unable to function normally. Not every person with NASH develops cirrhosis, but once serious scarring or

cirrhosis is present, few

treatments can halt the progression.

[PBC2012 in reply to kosy2]

Ok...so I have nonalcoholic fatty liver ...an enlarged liver and stage 3 fibrosis

...so where does that leave me basically?

[kosy2 in reply to PBC2012]

The question is, is the fibrosis from the NAFL or PBC. There is NO cure for PBC. For now, there is URSO that MIGHT slow the progression.

No standard treatment for nonalcoholic fatty liver disease exists. Instead, doctors typically work to treat the risk factors that contribute to your liver disease. For instance, if you're obese, your doctor can help you to lose weigh through diet, exercise and, in some cases, medications and surgery. If a drug is causing your fatty liver disease, your doctor may try to switch you to a different medication.

Sorry, I know this really sucks.

If you need to talk further send me a message.

[kosy2]

I found the following on the PBCer's web site:

Question

Is it possible to be in stage 3 or 4 by the biopsy and have normal LFTs taking Actigall or URSO? Are the LFTs actual indicators of the disease progress?

Answer

I always tell the second year medical students that "liver enzymes are NOT liver function tests (LFTs)." The term "LFTs" is a terrible one and really should not be used. [Help me convince your doctors!]

The values of the blood ALT, AST, alkaline phosphatase and gamma-glutamyltranspeptidase (GGT) activities do NOT tell you about the function of the liver. They also do not tell you about disease progression (i.e. the development of cirrhosis or deteriorating liver function). The so-called "LFTs" can be normal in individuals with end-stage liver disease.

In contrast, they can be markedly elevated in individuals with liver disease but normally functioning liver. In PBC, ursodiol (Actigall or URSO) may lower the blood alkaline phosphatase activity in the setting of significant liver damage (Stage III or Stage IV histology).

The best biochemical tests of liver "function" are serum albumin concentration, serum bilirubin concentration and prothrombin time. In PBC, the serum bilirubin concentration (which may also be lowered by ursodiol) is probably the best biochemical predictor of disease progression.

Hope this helps.

[EAJSWW]

Hi to the original poster....

Staging as said before here is a really emotive subject. You need to know a few things.

Firstly staging of liver damage via biopsy is not considered that accurate by many top specialists in the UK (especially those top exerts in PBC) The reason being is that when a biopsy is taken a tiny tiny amount of tissue is taken from quite a large organ. Liver damage casued by WHAT EVER reason is not uniform... o you can have patches of varying stages of liver damge (fibrosis/ chirrosis) through your liver. Depending on where the needle takes the sample from you could get any number of stages showing up.

For instance if the biopsy was taken from an undanaged piece of liver, you could show as having stage 0/1 if the needle hit even a tiny chirrotic patch, it could show you have stage 4 liver damage!!

As you see this could be a totally flase reading, hence why many UK doctors do not rely on biopsy any more!

Also it is important that you know that SYMPTOMS are NOT in unison with the quantity of liver damage!

A person could have only slight damage and suffer terrible fatigue or itching. Another person could have fairly advanced liver disease and still be working and have a fairly normal life! This is the fact of PBC....

To Kosy.... PBC and AIH do NOT have stages!!

The stages relate to the amount of liver damage and not the condition.... (this information was confirmed last week by the PBC Foundation!) But as said before the staging is not considered that accurate anyway!

To the opening poster, You should be under the care of your specialist who will monitor your symptoms (and help with these if possible) He will monitor your blood results and look at the over all trends of how your blood results are doing. Can I ask who arranged your biopsy if it was not a gastroenterologist or hepatologist? (I see you say you have never met your specialist?) Write down all your worries. And ask your doctor to go through these with you. There is very little point in worrying about your mums diagnosis, as even if she had PBC or if you have another illness ontop of PBC you will be treated as an individual as we all react differently. Reading stuff on the internet, and in some forums can be terrifying as there really is so much rubbish out there. Remember the PBC Foundation has some of the leaders in PBC research who work alongside them. The info you receive from them, in the Bear facts and commpendium and also if you ring them, will be the most uptodate information.

Take a deep breath, it is easy to get bogged down with all these scary words banded about, there are many many of us who have good lives after many many years of diagnosis (I too was told I was stage 3, 11 years ago!!! that bit of info scared the life out of me and has not proven helpful in anyway at all!!!)

Give the foundation or your local volunteer a ring, i'm sure they will help put your mind at rest.

x

[kosy2 in reply to EAJSWW]

Yes, I think that is what I stated.

[PBC2012 in reply to EAJSWW]

My gastrologist ordered the biopsy after my blood work came back positive for PBC, if that's possible, that's what I was told. The specialist I am talking about are at the University of Michigan hospital, they are liver specialists and transplant coordinators.

[KarenRL in reply to EAJSWW]

I was not indicating that my conditions were Stage 3, I was speaking of the fibrosis (i.e. liver damage) - I thought that would be understood, but I should have stated it more clearly. I'm aware that the conditions themselves do not have stages, you either have them or you don't.

I understand completely what you are saying about biopsy and it only showing a small sampling of the liver. But, if even a small sampling of your liver indicates a certain amount of damage, it still means the damage is there and has reached that level. It may not mean that your entire liver has reached that stage, but some part of it has....which is why they refer to your damage as having reached that stage. This is such a slowly progressing disease though and it could easily take 10+ years for your entire liver to reflect that stage (if ever, especially if you respond well to treatment).

If you haven't reached cirrhosis, your liver can also rejuvenate itself and the overall condition of your liver can improve. Here is the US, I think they just use the staging terminology as a measurement of sorts, in the absence of anything else. What I was trying to say in my post is that Stage 3 may sound scary, but you are still usually a long way from having to think about a transplant (if ever) and that everyone progresses at different paces and it's impossible to predict.

Because I understand that biopsy only shows a small portion of your liver and I'd like to know how my entire liver looks, I started doing some research a couple of weeks ago to see if there were any better options out there. Apparently,the Mayo Clinic has developed new, non-invasive technology that allows them to see the entire liver. It's called an MRE and I'm currently trying to get approved to go there and have one done. Have anyone else had an MRE at the Mayo Clinic? From what I understand, it's their technology and not currently available any where else.

I'd love to hear about it, if anyone has had it done!

[EAJSWW]

sorry... that comment should have said kren RL who said aih and PBC both at stage 3 (pbc moment)

[kosy2 in reply to EAJSWW]

With this brain fog I just need conformation that I not going crazy.

[wongie]

Hi, Reading all this and I'm more confused then ever before. I was diagnosed with PBC/AIH about 4 months ago. I'm going for my liver biopsy on Thursday and really don't know why now. Are any of you in the medical profession or is this just stuff that you've all been reading on the internet? To be honest none of what anyone is saying makes any sense to me. Maybe I'm must be simple, but I think I would prefer to stay that way, because I think if I started going into all that stuff I'd be feeling ten times worse. Is anyone else out there feeling the same as me?

[kosy2 in reply to wongie]

No, I do think most of us are in the medical profession but that does not mean we are unable to learn all that we can in order to deal with a life threatening disease and sharing our knowledge and experience. After all that is what I thought this site wall all about.

Everyone is different but I for one would never agree to such an invasive procedure as as liver biopsy without a full and complete understanding of why. I for one could never get my questions answered by the so called medical profession so I was forces to educate myself. Yes I do use the internet to do my research however I extreemly careful to use only the most reliable sources.

I am truly sorry if the truth about PBC is making you feel worse. That certainly is not my intention. My goal in just the opposite.

In the beginning it can be very confusing but the more you read, the more questions you ask the more you understand PBC. The issue I have with the medical profession is that THEY do not take the time to educate themselves about PBC. My experience with the doctors is that because PBC is a rare disease that do know much so they just leave us in the dark. I am the type of person that needs as much information as possible before I make any decision - medical decisions all the more.

In the end it really is quite simple - There is no cure for PBC and the medical professionals can only try to treat the symptoms.

Again, so very sorry if in my attempt to educate I have made anyone feel worse. I believe knowledge is power and any power I can take back from PBC makes me feel a bit better.

[PBC2012]

Yes wongie I feel the same ..I get confused with all the responses sometimes.I, like you, have decided to wait until I see my specialist next month. Good luck to you

[wongie in reply to PBC2012]

Hi PBC2012, Thank you and good luck to you too.