If you have PBC, how long would it take to destroy the liver?

[flowerpower66]

Is it something that could take 20 years?

[teddybear7]

Well I'm very new to PBC and there'll be loads on here that know lots more. But I've read that we're all different and it depends what stage your at (apparently a biopsy can tell that) but if diagnosed early and adopt lifestyle changes you can slow things down enough to enjoy a relatively normal existence. So I'm living in hope xxx

[Hidden]

Hello flowerpower66.

Well it seems a bit of a mystery somehow! I say this because each of what are termed stages of PBC can last pretty much any length of time. You can actually reach the cirrhosis stage and still be here in years to come.

Welcome teddybear7. Although a biopsy can give PBC diagnosis and apparently give some sort of stage, it doesn't actually give longevity of PBC. I was diagnosed Dec 2010. I would say I am pretty much in a better state currently than I was during 2010 when I started with the itch that was a bit more prevalent that it is these days. My LFTs and GGT were higher than they currently are too.

I don't go in for the stages of PBC. I was diagnosed due to symptons, ongoing LFTs that were elevating and then I had a positive AMA result. I know here in the UK it isn't standard for a liver biopsy unless there is doubt about diagnosis or perhaps a doctor wants to find out more. I haven't had one and have no inclinations if asked to do to have one. I do think with scans and bloods these days it is possible to inform a patient just how they are. In the US it seems the norm for a patient even when informed they have PBC to undertake a biopsy.

I do not worry about how long this or that will last as with PBC it may never happen. A lot more patients these days taking urso tend to go on to live relatively normal lives and die of something other than PBC. I decided long ago that I would deal with anything as and when and not spend time worrying about it as to me that is time wasted and less time to live life.

[spoul]

Progression of the disease is different in everybody. I'm into my 16th year now and although I have extensive cirrhosis I keep quite well and certainly not looking at transplant. However my friend who is in her 5-6 year has already been assessed for transplant. So you can't predict these things. Take care, keep well and don't worry x

[GrittyReads]

Hi Flowerpower, First I just want to second what's already been said above, about the progress of PBC being so variable. Also knowing what stage you are at when first diagnosed does not necessarily mean that you are closer to any kind of end, because some people progress quickly, some slowly: plus there are a lot of lifestyle changes you can make, that for many will improve the liver's health.

Also, I recall from an earlier post of yours that - at that point - you only tested +ve for AMAs. If this is still the case (have you had liver function tests?) there is a possibility you will never really develop PBC. I was told I tested +ve for AMAs 22 years ago, and yet my annual liver function tests are still perfect and I don't have any symptoms of PBC. It depends exactly where you are, what the tests say, if you are being good to yourself and your liver, and after that it's hard to tell, but most people die with PBC rather than of it.

[Hidden in reply to GrittyReads]

Hello GrittyReads.

Just wanted to say it is uplifting to read of people out there who have normal LFTs and no symptons of PBC and that they were diagnosed many years ago.

I still believe that PBC can slow down to a halt and then possible restart at a future date and by going with that, if my LFTs continue to slowly come down over time (I've been diagnosed 3yrs now) then I will count myself quite lucky.

Like I am sure we all are now, I continue to keep looking after myself. I am feeling pretty good at present, I always tend to feel a lot lot better this time of the year here in England when the nights are lighter and the weather hots up after what seems a tedious winter.

[flowerpower66]

Thank you all for responding. To be honest I am not overly concerned at this point in time. Gritty reads you are correct that I have only had positive AMA and normal LFTs. I am more on a mission to get my thyroid re checked and b12 which looks like it is happening after I saw different dr today.

[Hidden in reply to flowerpower66]

Hello flowerpower66.

Well you sound quite fine to me reading you have normal LFTs at present. You may stay like that and I sincerely hope you do.

I think the one thing that we will more than likely all agree on is that this PBC lark is quite dumbfounding at the best of tilmes!

[flowerpower66]

When I respond only half of my reply shows, what am I doing wrong? Me and technology ha!

[WendyMarie]

I just want to say that any auto-immune disease is unpredictable & different for each person. I have PCB & MS. I only hope my PBC reacts like the MS. So far, I have only had 2 MS attacks in 28 years! Typically, by now, I should be in a wheelchair, etc. Obviously, the MS is benign, but that does not mean that it cannot suddenly become progressive, for no apparent reason. So it is with PBC. It's a "wild-card." So, I try not to dwell on it & move forward, living my life. If things change, I will cross that bridge when/if I get to it.