I have been on URSO since jan 2014 following positive AMA and raised ALP of 135. ALT has been around 60 for a year and after 6 weeks on URSO came down to 40. My ALP came down to 99. 6 weeks further on ALT is now up to 50. My specialist had said in March that he was happy that the ALT was coming down but if it stayed over 40 or was going up he would consider a liver biopsy to check for AIH/PBC overlap and also to stage my PBC. I am currently asymptomatic. Does anyone have experience of being investigated for AIH overlap or for liver biopsy? One minute I'm fine the next I'm freaking out thinking I might be a few years away from needing a new liver I'm only 33! Thanks in advance
Hi, I have been told that raised ALT is ass... - PBC Foundation
Hi Mumoftwo. Like you I am a nurse and was diagnosed at 38 (4 children ). I am now 48. Biopsy - considered the gold standard here in Australia for diagnosis of PBC - at the time revealed stage 1-2. For about 7 years I almost forgot I had PBC, so little did it affect my life. To cut a long story short, my LFTS deteriorated significantly 3 years ago to the point where my consultant started investigating me for AIH among other possible conditions. This included Ultrasound, MRI,Fibroscan, many bloods and finally a liver biopsy. This revealed stage 3 PBC but only PBC. My dr consequently recruited me into the OCA trial for people like me who have become a "non responder' to Urso and I have recently been told I have cirrhosis. My Dr is firm and sensible - he says the time to worry is not yet ! He did tell me in response to a direct question that my liver would not last my lifetime but I guess I knew that already. So in real terms Mumoftwo what does this mean for you and me and all of us trying to negotiate our own PBC journey ? I guess accept the cards we have been dealt, heed advice, remember not to compare our stories as each is unique, enjoy the here and now and take the ride as calmly as possible. I still work as a nurse, look after my family and try to exercise as much as possible and eat well. I think you will do very well because your outlook is positive - I remember your earlier posts - and you have a wonderful life to enjoy. For the majority of people PBC is a so called "glacial disease"- ie moves at the speed of a glacier. Those like me who develop cirrhosis and the progression is faster are most definitely in the minority! I hope this helps a little and that your Dr is able to ease your worries.
I wish you all the very best from the land of Down Under.
P.S Forgot to mention ALT is consistently high - usually >80, always higher than 40. x
Thanks for your reply you're definitely right in that everyone Is different and I should compare too much. I think it's all just a bit overwhelming at times and although it isn't having an affect on my quality of life now I can't help thinking about what the future holds. Saying that, who knows what the future holds for anyone! I wish you luck and thanks for taking the time to reply. X
You are up beat that that's what helps, when you are a health professional it's hard as sometimes we are too educated and sometime ignorance is bliss! Simple answer don't work for you I am sure you want to know everything! I am so happy they now have alternative med's than Urso as so many people were out of luck if it did not work! Biopsy is really the only way to tell but that liver is devious as they have to hit the sweet spot so to speak as they can sample one part and you can be two or three different stages depending so they are really making the best guess but blood work is pretty solid as you know! Best of luck with the study let us know about your improvement you matter to us keep positive!
I've been told I may have an overlapping disease like AIH or possibly lupus. I got to a rheumy in June to see. I was told that I have some hep in some of my ducts, but they can't tell if I have hep for sure or not.
I was just diagnosed yesterday with stage 2 PBC, but I already have some fibrosis. I've not started URSO yet, but will on Monday when I get back from vacation. He says he thinks I have had this awhile, but like you, I am afraid mine has moved faster...though I have no proof of this. I know that my ALP has been raised at min for 5 years, and more than likely longer, as that was just when I started getting copies of my tests. I have no cirrhosis at this time, but it did concern me that my liver was as in bad of shape as it is since I am mostly assymtomatic save some minor aches and pains and fatigue. I have no itch and hope I don't. Karaliz is right. You can't worry about what will happen next. I have a gut feeling that my liver won't last my lifetime either, but what is a lifetime? 60 years? 70? 90? My great aunt, who has never been sick a day in her life, is 98 going on 99. But do I want to outlive all my family and friends? No. I have no children, but I do have a husband I love dearly and a father and aunt who depend on me. I plan to take my meds, hope to stay at this stage a long time and let my future rest in Gods hands. I have no control over my future, with or without PBC, so why worry further.
By the way I'm in the US and biopsy Is also the gold standard here.
Thanks for your reply I personally have had no side affects from the URSO, hopefully you won't either and it'll work well for you and help your LFTS. Fingers crossed all round for no dreaded itch! I'm sure it must drive some round the bend! Take care and I wish you well.
As far as I know, AIH and PBC are 2 seperate things but it is apparently known as AIH/PBC.
A biopsy is done to confirm and can apparently 'stage' PBC and tell a doctor the condition of the liver. It has to be noted though - I've never had a biopsy, diagnosed with PBC Dec 2010 due to being symptomatic, abnormal LFTs and also high titre of AMAs - in my opinion a biopsy only tells a doctor the state of the liver that has been biopsied. As we know the liver is the largest organ and though PBC is a confirmation it is present (due to it being seen in the liver cells). I don't think a biopsy can give a fully indication though of the whole state of it as though PBC present, the part of the liver that is biopsied might be in better or worse condition than the remainder.
I don't go in for these stages of PBC. In my mind why worry when it's known you have PBC and a biopsy can only state the presence of it and stage but treatment will not change due to one.
My most recent bloods taken February show my ALP to be 231 and my ALT 129. ALT is double the top of the normal range and the ALP is just under double the top of the normal range. My ALT and ALP (and GGT) have been much worse back in the early days (I was diagnosed Dec 2010). They are slowly coming down with time (been on urso since Dec 2010). I as 46 at diagnose and I recently turned 50.
Looking at yours Mumortwo81, I'd say you are doing exceptionally well. There is apparently some range that is considered within a normal for patients with PBC and abnormal LFTs and I was informed 2yrs ago that mine are doing just fine so in your case I'd say there is nothing to worry about. On the subject you state that your ALT has risen slightly, well mine go up a bit and down a bit, in fact both the ALT and ALP seem to see-saw each blood check.
It has also got to be remembered that doctors are inquisitve and like to find out more but at the end of the day if you feel you should uptake a biopsy if your doctor would like to take one then it is entirely your decision. I know myself I like to have an explanation before anything is undertaken and if I am not in agreement then I won't abide.
PBC can be asyptomatic for quite some time. You could say that I and everyone else were originally asymptomatic. The hospital consultant informed me after diagnosis that I had probably had PBC 'a few years' but it was only when I started itching in 2010 and took myself off to the GP that it was investigated.
My motto for living with PBC is to get up every day, face the day and enjoy life as you never know what is round the corner. For me I never took life for granted being a young widowed mother of two. PBC to me at present is just an irritant. If Idid not itch later at night then I'd not know I had PBC. It's the itching that can be disruptive for me at times.
Hi Peridot, thanks for sharing your story and advice it's definitely helpful knowing others have elevated ALTs in "pure" PBC. Some of the other tests which are linked to AIH are in normal range for me apparently so that's helping to reassure me that it might not turn out to be PBC/AIH. the registrar I've been seeing is typically off this week so I'll no doubt have a better idea next week. My next apt is in July so hopefully I'll get another one before then to discuss things. I am not sure how I feel about liver biopsy at the moment. I would only opt for it if the results might change my treatment otherwise i dont how helpful it is to be staged for PBC. As you and others have said it can totally depend which slither of liver they test. Thanks again.
Hi I've had the biopsy and they confirmed pbc early stages (no damage). They also confirmed no AIH overlap.. However all of my liver enzymes are now back in normal range (some were in the thousands). My ALT however remains high.. So god knows what that means.. I'll keep you posted.. Let me know how you get on x
Hi Mumoftwo from another nurse downunder I was investigated and diagnosed almost 12 months ago after incidentally finding AMA on a blood test and having mildly elevated ALT AST GGT and IgM. I also had a weak positive result to anti smooth muscle antibodies which apparently are associated with AIH and slightly elevated IgG which can be related to AIH. The doctors didn't mention to me ALT as being an indicator of AIH at mildly elevated levels - just that it and AST were a general reflection of something going on in the liver. I had a liver biopsy which diagnosed PBC only at this point, stage 1. For me having a biopsy was a way of getting more answers to what was going on, so when my doctor recommended one I had no hesitation in going ahead. Even if the news had been AIH as well, at least we knew what we were dealing with and could work out the best treatment regimes.
Almost all of my LFTs have come down to within normal limits after 9 months on Urso and I am fortunate to feel well at the moment - I do get tired easily but put that down mostly to a living a busy life. And that is what I try to do now, get on with living and enjoying my family and as Karaliz says the "here and now". For me initially getting all of the information from the tests and researching the literature for hours was an important step to accepting this rare condition I had never heard of. Now I hope for the best, and take things as they come as I realised all that worrying was not changing anything, just stopping me from appreciating all the good things I am lucky enough to have.
It is very early days from diagnosis for you still and it does take time for it all to sink in and for it to occupy your thoughts less.
Very best wishes to you
There's a few nurses on here! That's great that you are responding well to URSO. Thanks for all the positive vibes! I think ill feel better when I've spoken to my specialist and have a plan. I'm a bit of a nightmare cos I need to know everything about everything!
I am one of these irritating patients with a doctor if I find they want to keep me in the dark and do not explain. I think I sometimes surprise some with certain terminology but just because I am not a medic doesn't mean to say that I can't understand certain things.
Hi mumoftwo81 I had a liver biopsy done in March this year and confirmed PBC/AIH overlap I was diagnosed about 6 years ago with PBC. I have been on Ursofalk for several years and they seemed to bring my levels back down a bit but last blood test 4 weeks ago showed ALTs at 118 I have been on Steroids now for a month and due to see my specialist this afternoon and now thanks to this web site have quite a few questions to ask him whether he answers them of course is a different matter. I still question the PBC as thankfully I do not get the itching and my Copper associated protein in my bloods is not present what ever that means. Hope this helps
I know this website is great. So do they think you may have had overlap all along or is it something that can develop overtime? I wish things were black and white! Hope your apt with specialist went well
Just noticed your mention of you ALTs but if you read my response a bit further up this page you'll see that yours are better by 11 than mine were back in Feb. My bloods bounce up and down a bit, have done now since around 6mths after starting urso (had a really grat response in the first 6mths of urso).
Grat that you do not itch as I do, have done from 2010 the year of diagnose, that is what I went to see the GP about.
I had a blood test back in 2010 for copper and it to check for Wilson's Disease as that is liver-related where your liver has a high level of copper stores. The liver can develop a lot of abnormalities. Just as I always seem to be within a very low normal range of ferritin (iron) you can also store iron in very high levels in the liver too and that is called something else (do know the name, cannot think of it at present - having a senior moment, ha,ha).
Hi, have aih/pbc overlap being treated solely for aih. No itching, just fatigue and joint pain.
On azathioprine and prednisone for 9 months now and alts etc all back in the normal range. Immune system pretty low so am careful. Specialist said liver not damaged at all so am happy had an early diagnosis. Was told I will die of something else before pbc as its a slow illness . Aih is apparently more aggressive but treatable. Try not to freak out- which is hard. I find its the fatigue, joint pain that gets me down on odd days.
Thanks for your help and advice great that your liver is holding up well, I wish you well.
Hi think I am copying you,next step for me is azathioprine, how did you get on with it? My ALT and all levels down to normal, like you I saw an alternative specialist who answered all my questions, off for another blood test for TB to see if it's ok for my next step. Another week gone by maybe a glass of wine to celebrate my progress. Hope you are feeling well, have decided a PMA is the way forward helps the medicine go down.
Hi I have now been told my levels are down to normal,ALT now 27 from 118 four weeks ago. Now need another blood test for TB why I couldn't have had it checked last week when my other bloods were done I have no idea. Anyway happy that the steroids have done a good job next step immonosuppressants. Still a bit unsure about this. The specialist answered all my questions should think so as the clinic ran an hour and a half late so I was going no where until I had answers
Too right!! I would be exactly the same. That's great that your ALT is in normal range now
If I remember correctly from school many moons ago, the TB check was done by a series of pinprick dots that were made on the back of my hand and then a week later checked to see what it looked like (I had the vaccination). Maybe the surgery didn't have a supply in for checking at the time. Doesn't surprise me in the slightest how one can be messed about at a GP surgery these days.
I can remember back in the 1980s when I went to see a GP and he wanted a blood test to check for something he whipped needle out there and then and took blood. These days I can see a GP and he/she and I can be talking in surgery and in that time he/she could have got a needle out themselves and taken blood in that time line but they never seem to do so. These days you have to make another appt - usually a week later - to go back and have the nurse/healthcare asst do it.
Guess we should all be greatful for the good old NHS all these tests to help us, although a mine field are there to sort out our problems the more you research the bigger the mine field
Hi, on the French pbc association webpage they explain how pbc falls into 3 main types. Pbc that progresses within 10 to 20 years, pbc/aih overlap and pbc that progresses within 5 years to cirrhosis. Here is the link albi-france.org/maladies/ci...
I don't really think that is so as ALP, ALT& AST seem to declined in numbers as the ALP went down I was 86 when first diagnosed as of February they have dropped to 55 numbers to improve over night as healing happens those numbers will continue to improve! Diet is very important in the how process taking out gluten will cause less strain on the system so sticking to a gluten free diet will stop inflammatory conditions in the body it real hard but it a new lifestyle now that you have PBC!
Thanks to all for your replies, it really does help hearing things from others perspectives
Hi Everyone, I read all the post and find them all quite interesting. In January 2011 I went to the doctors to get a chest infection and ended up having a chest X-ray and blood test. About a month later I was told that I have PBC. I went through the test at Birmingham's famed Queen Elizabeth hospital , once a month I went to the liver clinic and done the assessment course. On June 15th 2013 I had a liver transplant . I have a few problems but slowly I was on the mend. I am now ready to go back to work. I take tablets daily but some of the so called healthy foods I have to avoid as they will affect my anti rejection drugs. But I feel good, at this point I would like to say a big thank you to the donors family for making such a brave decision at such a sad time. Having been through this I now put my self open
Hi mumoftwo81 I am waiting to go for a liver biopsy my specialist wants to do one because ive been on urso for 6 months n my bloods are still elevated I was diagnosed in march 14 with pbc I have all the classic symptoms . I've had ultra sound and ct scan he thinks I have more autoamune diseses and he wants to see what stage my pbc is at you sound in a pretty good state hope you are well try not to worry as I'm sure when we do it makes us feel worse xxx
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