Hi. I was diagnosed with pbc in Oct last year and have recenty had gall bladder out and liver biopsy. Today was results day and to my surprise my liver looks ok, im at stage 1 with an estimate of approx 20 years until the word transplant needs to be mentioned, if at all.
It was interesting to know my consultant carried out a mayo risk score, this is a mathematical calculation used to review disease activity and estimate survival in the event of a transplant.
I dont know my score, i should have asked really but I was told there was nothing for me to worry about because despite a positive AMA my liver is working ok. I am going to stay on the Urso by the way.
I do have symptoms, tiredness, muscle and bone pain, weakness, nausea etc occasionally, unfortunately though I just have to manage it as best I can because there is no easy answer to stop it.
All in all it could have been worse so I am grateful for some positive news for a change.
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hannah1973
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Interesting reading your post. I had heard of some chart for patients with PBC as we apparently have a different one with having abnormal LTS but there are what is considered a normal range for PBC.
I stumbled across the Mayo risk calculator online last yr and if you have your bloods to hand you put the figures in and it calculates. Obviously you'd have to speak to a medical profession to fully understand but mine (diagnosed Dec 2010) stated that at present time (this was 4mths ago I did the calculator) I had what was considered 'a normal lifespan'. But as I have mentioned to actually get the full info you'd have to speak to a medic but I would take it with myself that it was looking pretty good for myself even if my LFTs after 22mths on urso haven't got back to normal but they have altered in a good way over time.
Plus I feel confident myself that I'm doing relatively ok and with more time I do feel better and better and even the itch seems to feel different (even tho' still have at night, I have discovered a couple things with it I posted on a blog yesterday).
Hi Hannah1973. I'm so interested in your post because here in UK we don't have any kind of staging of liver degeneration as far as know (I has a biopsy and they found fibrosis but no mention of a stage). Are your enzymes elevated or a more normal level since starting on Urso? Glad you have to good news!
Hi. i am in the UK and was surprised myself because i thought it was only done in usa. Actually i dont think you need to use this system to get a stage that can be done from the biopsy result alone as far as I know. All my bloods are normal except for the positive AMA of course.
There is also a short-term model. Mine looking pretty much normal but I think this is also used for patients with PBC to decide whether they need to go onto a liver transplant list also. As said previously you will need your current blood results to enter but you will need a medical profession to actually interpret it. I'm not thinking about anything like this but put my own results in from Oct to deduce the info from it.
To Kaywal. As far as I can tell from the Gastro doc back Feb 2011 PBC for me is in the early stages. My LFTs at the start of urso were higher than they currently are. I started taking Urso Dec 2010 and my last bloods in Oct 2012 still show an abnormal result but it is said that some PBC patients never get a normal result even on urso but it can be of no detrimental significance. According to the GP last Oct., he said my LFTs for PBC were showing within what is considered a normal range for us. In this century now I think with blood tests at intervals it is pretty much a good indicator as to how one is doing with PBC and a scan can show up well. (Prior to diagnose I saw some prog on tv with an obese man in his late 20's and a man in his late 40's who were having liver scans live. The younger man showed signs of fatty liver from the ultrasound, the man in his late 40's who had been a heavy drinker for many years was showing the early signs of cirrhosis.)
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