hi every one i have just had confirmation that ihave a mild form of pbc what the hell does that mean

[chrissey7]

[Hidden]

Hello chrissey7.

Well I presume you have had the AMA blood test done that has give some confirmation you have PBC.

I would presume that a 'mild form' means that you are asymptomatic at present, that is with no obvious symptons of PBC (ie fatigue and itching are the most common and in my case it was the itching that prompted the GP visit). So I gather from this if it is the case you had some blood tests of the LFT done and that is how it has come about.

If this is the case then you may never become symptomatic and if you have not been prescribed urso as yet I reckon you are doing pretty well.

I also think you will prob keep having routine bloods done to keep an eye on the ranges so that anything amiss can be mentioned along the way.

I know a lot of people diagnosed with PBC (I was diag in Dec 2010) tend to say on this site they have had liver biopsy but you don't actually need one for PBC diagnose if you have the AMA's. In American I think it seems the norm a liver biopsy is done but in England as don't know where you are, it's not exactly the done thing anymore.

I have no idea myself with regards to this staging as PBC is apparently categorised into and I'm not bothered. I've just decided to go with it all, do my best to stave if off best I can and currently I don't tend to suffer much with fatigue now but the itching comes and goes at night (just had 3 pretty good nights so fingers crossed I am the same tonight). The bloods after 18mths of urso showed to be pretty good so that for now will have to do for me.

Please let us all know more.

[chrissey7]

Thank you so much I am waiting for scan results so I am still confused the letter ihave from specialist states normal liver function full blood count normal he says IF i have early pbc it is unlikely to progress to cause problems but i am still confused he also asked my drinking habits ???? my skin is definately changing to a lovely sun tanned look i am totally confused

[Val02]

Hi Chrissey7

If you have the AMA antibody that confirms PBC. Saying that if your liver functions are normal your PBC will be at a very early stage. It varies a great deal how PBC will progress from person to person. I assume you consultant means it is not causing a problem at the moment it may never; as Peridot said said some people can remain asymptomatic. However if he does confirm the diagnosis you should have regular bloods to keep an eye on it. The scan will show whether the live is inflamed - if it is then probably the PBC is more active than the bloods indicate.

Im afraid you will get asked the drinking questions over and over again. Although drinking effects the liver it is not responsible for the AMA antibody.

+ point of PBC - you get a great suntan!!

[Megamum]

Hi everyone

I was diagnosed last January my consultant said you had to have 2 out of 3, raised bloods or liver biopsy and I didn't need the biopsy as the bloods confirmed. Very confusing as it was an incidental finding following hypertension being picked up. If I'm honest I had the fatigue a long time but brushed it aside and tried to carry on. I must admit I'm on ursodeoxycholic acid and don't know if that is making me feel so awful - I didn't feel like this before the tabs!! Does anyone else feel the same? I'm seriously thinking of asking if there's any point if you feel dreadful.

Sorry to moan I'm just so upset about the whole thing

Ps I'm in GB in the South West

Chris xxxxx

[Jaycee in reply to Megamum]

Hi, I was diagnosed through raised LFT and a liver biopsy, I dont have the itching (yet) I was put on the Urso, was on it for about a year, I started to get horrendous tummy problems and stopped the Urso about 6 months ago, I have got my life back, I didn't realise how ill I had been feeling until I stopped it, my brain is now working again,and I feel so much better, my latest blood tests are all normal,so have no intention of going back on the meds. I see my consultant at the end of the month so will let you all know how it goes, Hope you feel better soon, Jenny.

[LStonelli in reply to Megamum]

I am happy to be able to come across someone else who feels the meds are making us feel worse with them. I am seriously thinking of stopping the ursoTo see if I start to feel less fatigued and achey

Chris.....please email me directly so we can discuss this further. [e-mail]

[LStonelli in reply to Megamum]

I didn't feel this bad before the meds either. I don't know if it's the disease or the meds that make one feel so awful.

[DonnaBoll Administrator]

You can have early stages of PBC. If you a + AMA and elevated liver enzymes, that is sufficient (for most) for a diagnosis of PBC. be sure to keep monitoring you liver function tests every 3-6 months according to the Standard of Care. In the meantime, I hope he prescribed Urso. This is crucial.