Contradictory information

[Zelda5]

So I'm just trying to understand and I'm not trying to be anal, but I find a lot of contradictions even here. These statements were made by PBCRobert.

8 years ago:

There is much uncertainty when it comes to what constitutes a diagnosis of PBC.

In the main, the concensus is that AMA positive is enought to diagnose PBC. Yes, there are about 5 % of people with PBC who are AMA negative.

Given that PBC manifests itself with a build up of bile which *tends* to affect liver function and cell change within the liver. Given that Urso is a bile salt which can slow down the progress of the condition, by flushing bile out of the liver. Are you going to wait until you have cell change or raised LFT's before you start the process of flushing bile from your liver?

Research projects will have much more robust or stringent criteria for inclusion and these tend to focus on 2 of the following: AMA+, raised LFTs (be that specific measures ot in general), presenting symptoms, and/or some kind of cell change.

As it stands at the moment, most hepatologists working in most liver units would not necessarily wait for at least 2 of those circumstances to occur before diagnosis. As a reminder, there are many people who have stage 4 cell change and yet remain fairly asymptomatic.

So, I personally would not go down the "Well, I have no symptoms so I don't want to be diagnosed and don't bother with the Urso either" approach. PBC is a multi-faceted condition and there are many aspects to its management. Each case must be taken on its own merit. As a Foundation, we just hope that each case is taken in as informed a manner as is possible.

As an aside, my understanding of ANA is that it points to a condition other than PBC, but that is a back of my mind memory and would need verification from elsewhere.

Yours,

Robert.



5yrs ago:

Welcome.

I hope Gritty finds this post as she will be able to help more than I can.

There are many many many people with positive AMA who never ever ever develop PBC. However, as you have AMA+, it would make good clinical sense to monitor you every year or so to look for any changes in your blood work. Also, if symptoms do present ever in the future, you have a good idea of where to investigate first.

That all said, statistically it is much more likely to be one of the ones who never develops PBC than someone who does.

This reminds me, I need to go and recheck the number of people with AMA+ who never develop PBC. The number is astoundingly high, I promise.

Yours,

Robert.

[Chris21]

I’ve never tried to understand my PBC. As I got diagnosed with lupus sle/ sjogrens, I was told my bloods were showing dangerous levels of 🤷‍♀️ Went to gastroenterology who said PBC and put me on urso, all bloods since have been great and the gastro man checks with me every 2 years. I’ve never had any pain in my right side, pancreas plays up but they’re not bothered by that as amalayes never reaches extremely high levels.

[hells456]

I don't think it's contradictory, more that PBC is understood better with time and research.

There are three markers that point to PBC, AMA positive, raised ALP and cellular changes in a biopsy. For the majority of people a diagnosis is made if they have two out of the three. There will always be some people who don't fit the norm and will be provisionally diagnosed on just one, usually biopsy, but sometimes the ALP. In these cases urso will be tried and if they respond the diagnosis stands.

We now know that AMA alone does not necessarily mean you have PBC or need medicating. It does mean that you are far more likely to develop it and should be occasionally monitored.

[Zelda5 in reply to hells456]

Yeah the criteria was the same 8 years ago. I understand that. But, as he said why wait til there's cellular changes before you start flushing the bile out of your system. I've talked to people who've never had a raised Alp. They had other elevated enzymes, Ama and a biopsy was done. Then a diagnosis was made. So, what if your early stage and the biopsy is done in a area that doesn't show any bile duct damage and they miss it entirely. It also said research projects require more stringent criteria. Research! That's the problem I have with the whole thing. I read some studies where they followed people for years and their enzymes eventually showed changes. Others that say some Ama positive people will never develop pbc. I'm really debating on going to the Mayo clinic. If I wasn't still having issues I would have let it go a long time ago.

[Chris21]

I’ve never had a biopsy, just routine bloods does everyone with PBC have a biopsy?

[CeeCee101 in reply to Chris21]

Never had biopsy either my hematologist says they just use fibroscans now

[Chris21]

Ohh, never heard of a fibroscan. Hopefully my bloods continue to stay in their range and nothing else but urso will be needed. 🙂