How many stages are there of PBC? And when should the gastroenterologist offer Urso?

[sarahalawson]

The specialist has told me I'm in the early stages of PBC, but not specified which one, or how many there are. It's my understanding this progresses at different rates varying per person, is this correct?

[Tumbleweed41]

Hi sarahalawson -

Yes - to my understanding there are 4 stages of PBC. By the time that I was diagnosed I was in stage 3. That was 6 years ago and I have been "maintaining" for 5yrs. -

Just google PBC and you will find more information than you want. -

[sarahalawson]

I've googled, I just seem to find the same description every time. Do you do anything special to take care of yourself? What do you do to maintain?

[Anne123_45]

Hey Sara I'm in early stage, no liver damage as yet.. They put me on urso right away.. Hope this helps.. It slows the progression.. All in all ive not found taking it too bad.. I take it all before bed to give it chance to work on its own without other agents like medication..food etc getting in the way.. And to avoid the symptoms :-).. I've more trouble from my other aliments to be honest x

[Anne123_45 in reply to Anne123_45]

It depends where you are, I'm in North East and they don't like staging it.. I pushed for a stage.

[meandmypbc]

I was diagnosed about 3 weeks ago, and given no stage yet.

I still have to get an mri. and bone scan.

I took urso for 7 days , straightaway,and couldnt tolerate it....some people can some cant.

I am seeing specialist in a few weeks to see what they can do and maybe they will stage me then.

[exy21]

I'm in Scotland and my specialist won't stage me he doesn't agree with it. Was put on urso first and couldn't tolerate it tried lots of other meds but same. So I'm on nothing. Eat well and take milk thistle zinc multi vit and sometimes vit b when I need some energy

[Hidden in reply to exy21]

Great reading that your specialist in Scotland doesn't agree with staging of PBC as I don't either! I was diagnosed Dec 2010 (sorry I keep repeating that in replies) and I got the drift that the consultant I saw here in Lancashire didn't agree with that either. He just said 'early stage' to me and said he'd basically tackle things if they occur. That to me sounds far better.

Out of interest exy21 how are you getting along on just milk thistle. I have taken milk thistle myself as a personal experiment during last yr and I got good results from my LFTs. I do take urso tho'.

[exy21 in reply to Hidden]

Seems to help certainly notice when I run out. My auntie has other auto immune and she says it makes a big difference to how she feels.

[Hidden in reply to exy21]

I had a short break of the milk thistle couple months ago as due to UK legislation now the mgs has changed (less mgs) and the price has rocketed somewhat.

Started taking them again in the last couple weeks and I have found the itch seems that less prominent of late but that could just be coincidence. I don't tend to get any side-effects from taking milk thistle. I usually swallow with lunch, take the urso with breakfast and then just before teatime.

[Hidden]

Hello sarahalawson.

I personally don't bother! I've just been said to be 'early stage' of PBC. I presented to the doctor back in 2010 with itching and fatigue and my bloods were abnormal but not abnormally high. I had a scan and it showed pretty much normal liver and surrounding organs. The bloods gave a reading of a bit of inflammation.

Since starting urso Dec 2010 my bloods have started to come down. Apart from still having the itch at the night, fatigue long since gone (but in 2010 I was working full-time and over the allotted hours per week). I receive a print out of the bloods each time I have them done. I did notice when I got them all just after diagnosis in 2010 the LFTs had started to come down naturally from August 2010 to Nov 2010 (final ones prior to diagnose).

I know in America for eg it seems the norm for anyone diagnosed with PBC to have a biopsy for what is known as staging. Quite frankly I don't want one but it's not standard here in England for biopsy if you have been diagnosed with AMA blood test, have abnormal LFTs and symptons of PBC.

Stages of PBC can apparently last a long time, some will never progress beyond an early stage, others who are unfortunate to reach a later one (ie cirrhosis) may too never progress beyond that. There seems just no way of knowing how PBC will progress.

I have read a couple years ago that urso tends to be prescribed to patients with PBC who are in the earlier stages of PBC but that was then and medical opinions change all the time so I do not take much notice.

I know the hospital consultant on my return to hospital Feb 2011 (he got the GP to inform me of the diagnosis Dec 2010), he briefly outlined PBC but he didn't mention more than 'early stage' to me of PBC despite me telling him I stumbled across PBC several months prior to diagnosis. My husband was with me and I'd not told him prior that it could lead to transplant. The hospital doctor finished with that 'in some cases PBC can lead to transplant'. He never informed me of how PBC can progress or what can happen. He himself said that it would be monitored and addressed if need be at the time. That is definitely how I think myself.

[dianemle]

I am stage 4 but it has taken 12 years to get there

[Oidra]

No idea what stage I am at, it has never been mentioned during the 13 years I have known I have PBC. In the PBC book there is a section on "staging" worth reading.

pbcfoundation.org.uk

[Karaliz]

Hi Sarahalawson ! As far as I know there are 4 stages, gauged by liver biopsy. I was diagnosed 10 years ago at 38 and biopsy revealed stage 1-2. I jogged along on Urso for years until nearly 3 years ago when my LFTS became significantly worse although i felt much the same. My specialist ran a raft of tests including a biopsy which showed PBC had progressed to stage 3 fibrosis. Apparently PBC affects the liver in a uniform fashion so 1 sample is pretty indicative of the overall state of the liver. As the rest of the gang on this site have said, this condition affects each of us differently and all we can do is hope for the best and strap in for the ride !!

My Dr says he will tell me when to worry and it's not yet !

I can only speak for Australia but I believe Urso is prescribed the moment the diagnosis is made - this was my experience.

Take care ,

Karaliz

[Hidden]

I still think the problem with liver biopsies is that if you just have one taken from one area it might tell a slightly different story as to what another part of the liver does. As we know a liver can be damaged in one part yet not in another.

I still think that it can be told how one is progressing with PBC can be done via less invasive methods. I did see a programme on tv back in late 2010 just before I was diagnosed with PBC and on it showed 2 different men. One was obese and only in his late 20s and classed as obese, the other one was late 40s and alcoholic. They had scans on air and it showed the obese man to have a fatty liver at the time and that could be controlled by changing his diet. The other man who had drank for years, his liver was showing cirrhosis. After I got diagnosed with PBC it annoyed me somewhat as I thought of the man with cirrhosis through drinking and I'd never been much of one. What sprung to mind was that whereas this man would live a compromised life with having cirrhosis, if he ceased drinking and took care he'd not progress hardly at all whereas with PBC it's not like that.

Urso is apparently prescribed here in the UK on diagnosis of symptomatic PBC. I think there seems to be some exceptions to the rules and that is either the consultant's opinion or the possibility that one who is diagnosed without any symptons and having repeats of normal LFTs aren't prescribed but monitored to the possibility of having urso at a later time.

[ozzysue]

I was told 2 years ago I had pbc a biopsy showed stage 3 I was put on urso, I sometimes have to miss taking it due to sickness but do try as since taking it whatever they look for in your bloods has steadily improved.sue x

[dm1360]

I have not been staged either after my biopsy, but they said there was alot of bile duct damage and destruction , and have also had a very fatty liver for about 4 yrs,put on 1000mg urso makes me bloat, feel sick and hair loss,plus the itch, joint pain fatty lumps appearing at random .but I still have heaps of tiredness if you call it that some times feels like exhaustion. I know I'm lucky in some aspects but man I hate facing each day knowing I cant stop this.I have been gluton free for about 4 yrs it makes no difference to how my body choses to distribute any food content and some times I just do not want to eat because of constipation, bloating and the whole consequence of food.Good luck to everyone battling this disease