Hi have recently been diagnosed with pbc and prescribed urso ( only 500 mg and I'm a large lady ! ) I am due to have a liver biopsy next week as some other blood test was off ? Not happy with the risk of death 1-3 in 1000 !!! Not sure why having biopsy as consultant was going to do a fibroscan but changed it to biopsy, going for pre assessment tomorrow but think it's only nurse , going to ask questions but would like people's thoughts ...... should I ask to postpone and ask for non invasive tests first ? Think dr just wants to prove fatty liver although 2 normal ultrasound scans showed normal ( I weighed over 20 stone when scanned ) need some advice please . I'm in the uk
Liver biopsy: Hi have recently been diagnosed... - PBC Foundation
Liver biopsy
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Hi there
Maybe they think there's a crossover with another autoimmune condition called Aih that's why I had my biopsy . Fibroscan cannot confirm pbc but can give you some idea what stage you may be. USO normally given on how much you weigh. I take 1000 mg a day at weigh 78 kg. Hope this helps u a bit.
Thank you I mentioned aih to consultant ( as a rheumatologist had suggest this ) but he dismissed it ! But then order blood tests query ahi ! The research I have done said more urso will question it at next appointment, think maybe he wanted to see if it did anything really not sure and don't have much faith in consultant as he changed his mind and back tracked in the hour consultation oh and gave me diagnosis of pbc and told me to google it !
Is your consultant a gastroenterologist or a heptolagist because the hep doc would be the best to see for pbc. My gastrolagist referred me to Birmingham after trying to treat me for a year think she just really didn't know enough bout pbc
Hi Louisethew
A biopsy is still used invariably to gain a final diagnosis when blood results are "off". I had a biopsy to confirm diagnosis. My biopsy was done without any anesthetic back in 2006 and although I felt some pain in the upper right shoulder (referred pain) it was quite a quick process although the recovery time for the liver requires you to be quite still for quite a while after the procedure. My memory is a bit foggy now perhaps someone will come along soon who has had the biopsy more recently.
Not sure where you found a death risk of 1-3 in 1000. I wonder if that is for something more than primary biliary cholangitis. I can believe it of AFLD or even NAFLD but with the use of Ursodeoxycholic Acid for PBC the mortality rate is reported to be the same as for the general population.
My patient information leaflet (PIL) clearly states weight and dose and anyone over 110 kilos is prescribed 7 X 250mg capsules a day. What tablet/capsule have you been prescribed and at what dose each tablet/capsule. 20 stone as I understand is over 127 kilos so it would definitely indicate that you are not on the correct dose assuming you have a similar medication to mine. Best to have a look at the PIL that came with your medication and then speak to your doctor.
I am sure you know this already but to give yourself the best outcome for a longer life you need to lose weight, eat healthily, avoid all processed food and fizzy drinks, cut out sugar and sugary produce and reduce salt intake and the old mantra drink plenty of water. As you say you weighed over 20 stone when scanned I wonder if you have already started the process of weight loss.
If you have not already done so join the PBC Foundation through the icon above, free to join, once in you will find a wealth of information from a newly updated compendium to back copies of the Bear Facts magazine together with video recordings of a helpful doctor patient consultation and old recordings of a conference presentation which although a few years ago is still pertinent today. There is also a recording of a webinar hosted by the PBC Foundation which I found very useful.
Let us know how you get on, lots of friendly helpful people on here who will no doubt come along soon with more information.
best wishes
Thank you , the numbers I mentioned 1-3 in 1000 are the hospital death rates from liver biopsy, which is what is stressing me , am going to speak to dr about urso dose I'm on 2 250 mg daily . Was already dieting before diagnosis and have lost over 2 stone and not giving up . Thanks to pbc foundation I have found them very informative, consultant gave me no info just told me to google it !
Hi again Louisethew
I had not known about the numbers mentioned and totally understand your hesitation. I suspect there is more to the statistics than meets the eye, I know one of the nurses told me off because I kept getting up - I could not understand what all the fuss was about until some time later. Now it is easier to find this sort of information for ourselves. Well done on the weight loss, over the last year I have managed to lose 15 kgs (was 89) now down to 74 but am really struggling to get to 70 when I hope the hepatologist will allow me to reduce the amount of urso. I am sorry to read that your consultant was unhelpful but glad you have found the Foundation.
best wishes
Have you joined the PBC Foundation? pbcfoundation.co.uk
If you download the "Bear Facts" magazine from August 2017 you will find the pullout very useful. The title is "EASL Clinical Practice Guidelines: The diagnosis and management of patients with Primary Biliary Cholangitis" in lay terms what does it mean for the patient?
I'm going to use the information on my next consultant appointment.
It gives information on diagnostic procedures and tests and the right questions to ask.
It is free to join the foundation. Lots of up to date information.
Liver biopsy is recommended as the best tool to determine the stage of PBC and set the baseline. After that, you can continue with the non-invasive tests as the wave ultrasound or fibroscan. Liver biopsy is a common procedure, it is very quick and most people tolerate fine. I had one done, when I was diagnosed with PBC last year. It was done under light sedation. I wasn't asleep, just a bit spaced out, very comfortable.
Don't be afraid. You'll be fine and hopefully the results will be good and it'll give a piece of mind.
All the best!
Thank you , still stressed , will see what the pre assessment say as dr didn't really explain why it was been done , at the beginning of consultation he said they didn't do biopsy anymore just fibroscan then at the end of consultation booked a biopsy and not the scan .
I'm in the USA, where liver biopsy is commonly done for establishing the PBC staging. It's the most accurate way. My gastro doctor strongly recommended and I'm glad I did it. However, it is only done once, to set the baseline. After that, only ultrasounds.
Since you are in the UK, they may use different standards.
Hi iagra,
I just had an ultrasound here just recently, and the technician asked me why they scheduled me for an ultrasound when according to her they don't show fibrosis whatsoever. She said only a fibroscan shows liver scarring and fibrosis. She said the ultrasound was only going to show if I had tumors or masses.
It turns out that the gastroenterology clinic that I've been going too doesn't have the fibroscan equipment and that's why my hepatologist ordered the ultrasound.
So, I called different gastroenterology clinics in the next town over and found a doctor who "does" have the fibroscan and had my hepatologist send an order in for me to have a fibroscan over there and that's where I got in and I'm scheduled to have it in December.
Have you heard that about ultrasounds? That they don't really show what we need to see for ones with PBC?
Stella ❤
That’s what I understand about the ultrasound. Still good to have one. That was first, then fibroscan.
Sorry, I should've made myself more clear. This is not a regular ultrasound that detects masses and tumors. It is a special ultrasound, called Shear wave elastography. But, in short, we call it here: wave ultrasound. This ultrasound shows scarring/fibrosis. Maybe it's called fibroscan in England. I see a lot of people mention "fibroscan", but, it could be the same as the wave ultrasound. Options here, as far as I know, in the US, liver biopsy or Ultrasound with Shear wave elastography. Liver biopsy is more accurate, shows more, this is why it is always used for the patients initially diagnosed with PBC. One time only. After that, once or twice a year, you do the wave ultrasound test, which will show if there are any changes. I think it is totally reasonable for your doctor to start you with the liver biopsy and then use either wave-ultrasound or fibroscan (which may be the same thing).
The reason they did the regular ultrasound is probably to rule out other possible problems, like a tumor. My GP ordered regular ultrasound, before I had a biopsy. This is also a very common practice here in the US.
Fibroscan here in the US, is shear waves that travel through the liver & provides valuable information that might otherwise only be available through biopsy. It gives overall health of the liver, ie, stiffness
Hello Louisethew,
I'm here in the States. Nice to meet you. I had a biopsy back in Feb. of this year. It came back mild fatty liver and unremarkable bile ducts. However, others have stated on here that with a biopsy, it depends on what area of the liver they take the samples from too. And so labs are done as they tell another side of the story of what's going on with your liver.
Well this got the hypochondriac all worked up in me...and I started to stress that maybe I had issues in spots on my liver that they "didn't" get samples from. 😨
Soooo, I called my hepatologist and told him I wanted a fibroscan just to establish another baseline. It's been eight months since my biopsy anyway. He did set one up but not until Dec. That's the soonest I can get in for one out here. So I did a little research on them since I had the time, and found out that they are "weight-based" and if you are overweight and your BMI is past a certain number, then the fibroscan can be inaccurate so, I'm just guessing here but, that's probably why they opted for a biopsy for you instead of a fibroscan.
Stella ❤
My GI said fibroscan is replacing biopsies. He is more confident with fibroscan. He gets the overall liver status. I have 11 fibroscan pics.
In the US, the ultrasound is called "Shear wave elastography" (or, in short "wave ultrasound"). It's not a regular ultrasound that detects masses. Maybe in the UK it is called "fibroscan". I don't really know. But, the common scenario, here in the US: First, regular ultrasound to rule out anything else. Then, liver biopsy, to determine the stage and set the baseline. After that, once or twice a year the "Shear wave elastography" ultrasound to keep monitoring the liver condition. I had regular ultrasound, liver biopsy and one wave ultrasound, since I've been diagnosed in Aug/Sept 2016.
I had a fibroscan and then a liver biopsy before I was put on Urso. Currently taking the same dosage of 500mg a day and weigh 82kgs. Seems to be the way they tick off all of the boxes and then the biopsy is the final marker.
hi i had a fibroscan last week i have pbc for 8yrs on urso 1000mg aday they go on weight i was told i am 12st but i was told without sounding rude to you bbut if u are overweight fibroscans are a bit unreliable could be reason if true but would defo ask good luck im in uk at QE birmingnam
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Thank you , that's what I found last night when I googled fibroscan 😂 I don't have a problem if that the reason just wish Drs explained more , apparently Birmingham has a good reputation for pbc ? I'm not that far away
yes it does the clinic is busy but staff are lovely in 8yrs ive only had a prob with 2drs well not a prob just a bit above them selves but thats not unusual lol i see a different one everytime i go people come from wales and ireland to this clinic as i believe it is centre of excellence for liver probs when i first seen the main man as was then he was proffessor nuryberger he told me i would die with it not of it so there very confident and 8yrs down line i am feeling no probs that i no of but i do have fibromyalgia on top and 2diff arthritis ut half the battle with me is knowing what i have it helps me deal with it x
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Whats the name of clinic in birmingham
Queen elizabeth hosp
Morning.500 mg urso has NO effect.All the trials from 1980 till now resumed that if the dosage is less than 13-15 mg per kg, the treatment has no effect.More than 15 mg per kg give side effect witch is not recomanded.So get second opinion/change dr or get treatment as u should.See how many kg x 13 mg urso and that is your dosage every day.All the best
I come from Wales and see dr neuberger but recently seeing professor Hertchfield as I am on a clinical trial so been back and fore a lot recently. They certainly know what they are doing
hi they certainly do pro neuberger lovely funny man dr hirshfield very confudent and thrre sll very down to earth
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Yes feel well looked after by both been seeing dr Hertchfield recently as I'm on clinical trial.
i don t get to see mai drs anymore as of last visit october been down graded lol ive got a nurse now and after next visit in march if still all well then be yrly visits lol
For PBC you need to be taking more URSO. I'm taking 1,000mg and I'm 65kg. I had a biopsy shortly after diagnosis. It didn't cause me any problems or discomfort. I actually see a gastroenterologist here on the Isle of Wight and have every faith in her. She gives me great confidence in her knowledge and understanding. I also have an ultrasound annually and a dexa scan every two years. Blood tests every six months . Try to make a note of all the questions you want to ask beforehand, it's easy to forget once you're with the doctor.
Hi Louise - I was diagnosed with PBC from bloodwork in March 2017 and had the diagnosis confirmed by biopsy this week. I think the biopsy gives you the most complete answers. I’m glad to know I don’t have AIH or anything else and where exactly I am on PBC. Suggest setting aside some time for recovery, the procedure was painless for me but I felt quite a bit of pain when I got home and fatigue for several days. Good luck !
The liver biopsy is the Gold Standard to rule everything else out and confirm PBC. It is rare to have any complications and worth the risk to know what disease you have and don’t have, to get the best treatments. I had one it took 15 minutes had no ill effects at all and I felt better knowing what I had and what I didn’t have good luck and read all you can about PBC but don’t scare yourself which is what I did! The treatments work for most everyone and if caught sooner than later you will die from something else my doctor said. Good luck let us know how it goes.
Hi Louisethew Newish to diagnosis months of questions, June I got officially confirmed without biopsy. It is sorry to others not the procedure it waas thought to be needed to diagnose.
I am due to have a biopsy and I refused two up to this one, that was because untrained gastros wanted to do it to diagnose. Stages smages, they have no bearing on progression in my opinion.
Diagnosis can be confirmed by immuno blood tests, this is what my hep said, he is greatly respected as a PBC specialist.
I came up as negative for PBC a few times. It is not needed for diagnosis, I was empowered (never told to refuse) by the PBC Foundation but I did. My GP read up fast and helped me get to a hepatologist who had some PBC knowledge, I had cancelled first one, she said 'You clever thing!' relieved as I had expected a roasting for taking it upon myself to know better.
I was then referred to a liver specialist unit. So both she and George Mells said I was right to refuse. If you have standard PBC it can be diagnosed without a procedure that actually takes 1/5000th of a piece of liver so if you as the ultrasound guy pick from a healthy part of the liver it would throw up a negative.
I am sadly about to have a biopsy taking several pieces, this is to determine a variant PBC that is different in that it disintegrates the bile ducts after damage, so a fibroscan shows a good score. I need this as if I have Ductopenic variant, it has to be acted on aggressively.
I have been talked through whole procedure this morning and they are as reluctant as myself to do it, PBC has stages but are really not indicative of say for example cancer stages.
Your Urso as maybe somebody mentioned should be 13mg per kilo of body weight. I found this out when like you I was on too little. That alone says to me you are not being treated by a consultant who knows enough about treatment for our disease. Also what does he think the blood is throwing up, you have a right to know, unless you do not want to be told.
I was relieved when I cancelled my first two. This one is one I am not gonna lie, worries me I was told the odds and complications today, but happy to have as it is really needed in my case as Urso is not working and I rapidly get worse blood results, hey ho.
I am not advocating you should cancel but if I had too many queries with no correct answers then I would not be inclined to allow this. They know you have PBC already I think you said. xx
Hi Jo_Br,
It's all so confusing. So this biopsy I had back in February this year stating I had only mild fatty liver and was told I'm in early stage one could be all wrong? They could actually be mis-staging me because they happened to snag a sample of my liver in a good spot? Wow, that's scary news.
Besides the biopsy, regular ultrasound and labs, this is all their staging me on. Guess I'm glad I'm having the fibroscan in December. I guess either way the protocol is the same. I still take this URSO. "But" I guess if I was further along, as I do have the exact symptoms as Gwillistexas who is stage 2, maybe I'd be put on Ocaliva instead or in conjunction with URSO.
This is crazy that they are telling ones out here or at least at KU Med in Kansas USA, that biopsies are the go too procedure for PBC staging.
Stella ❤
But you’re so fortunate you can take Urso. Oclavia was (as you know), formulated to take along with Urso. But in my case, taken alone. We shall see In lab results the next couple months, if it’s working. Try not worry yourself like I do (I’m a good one to say that). I’m a born worrier. We just all have to find our happy place❣️
Gwillistexas,
Thank you. I just would like to know exactly how much my hepatologist really knows about PBC. So thankful for this forum as I wouldn't normally have pushed for the fibroscan otherwise.
Stella ❤
You’re welcome. I understand your feelings. My nurse practitioner told me this...we have to be our own advocate sometimes. True👍
Gwillistexas,
I thoroughly agree. You know? I'd forgotten that early on a few months before my biopsy last Feb. that they did an MRCP. Then I think it was a week later, they did an ERCP. That test showed my bile ducts as normal. Unremarkable. Those two were done by my GI. Finally when I got the appt with the hepatologist, he ordered the biopsy.
So at least I do have some sort of baseline. In December last year my bile ducts were seemingly normal.
You must be so relieved after today. It's nice to have a bit of peace isn't it.?
Stella ❤
Yes it’s a great feeling. I’ve not had those 2 tests you mentioned. How are they done?
Hello,
MRCP is a special type of magnetic resonance imaging (MRI). It uses computer software that specifically images pancreatic and bile ducts, which are often the site of tumors. Fluid naturally present in the ducts serves as a contrast substance.
ERCP (short for endoscopic retrograde cholangiopancreatography) is a procedure used to diagnose diseases of the gallbladder, biliary system, pancreas, and liver. The test looks "upstream" where digestive fluid comes from -- the liver, gallbladder, and pancreas -- to where it enters the intestines. So, ERCP puts a scope down inside to have a really close look. I was completely out for this procedure.
Fun times. 😨
Stella ❤
As I had no intention of ever accepting a biopsy (I never say never though) as the stages seem to have no bearing on a patients symptoms, enough people on here to testify to this. They don't do regular ones to check that stage and thank goodness!
This link is for the US, note the biopsy no longer needed bit! Maybe worth a discussion in Kansas Ktltel
livingwithpbc.com/pbc-info/...
The blood tests now very specialised for us are a great indication, very simply non professionally put by me from my hep, if going down your liver is being protected by the meds. With me, if going up and other bloods showing poor nutrition (despite eating lots and good foods) then other action can be taken, the Meld and UKELD scores also come into play. The Fiboscan can suss out the liver state, low score soft non scarred liver etc.
I am as skinny as can be, have a non-fatty diet and still my blood results show high cholesterol, the biopsy may show fatty liver, but it maybe just one of the indications again to show the state of play with my particular PBC walk.
My liver may even show in the biopsy especially if I have the Ductopenic variant (from all the questions I have asked and googling medical papers only Stage 1 maybe, this does not mean I am not progressing rapidly at all. It is just how in my opinion, my PBC has decided to play out in my body.
The immune system plays some nasty tricks, not just on us here but so many people attacking random body parts wherever it so goes, genetics I expect will be the key to all our locked woes.
Sadly people here still get different treatments and if you walk into a consultants room, sit down, get a diagnosis of PBC and they prescribe Urso and other meds, no Urso or suggest the biopsy, how many patients would question it.
At my very first appointment, I came out with 5 different meds, a biopsy planned and my world rocked while waiting for the meds, I was already planning not to take the steroids given, not happy with the biopsy. My husband said if it was me I would just accept it. My head screamed no, I am glad I listened to me, having been through botched fertility treatment and knowing that until all non-invasive procedures are carried out nobody should be having a 'little look-see'
I never took the steroid, the calcium was playing havoc so later the hepatologist (thankfully checked all bloods) removed that. The anti-allergy was not suitable and my Urso was enough for a PBCers leg!! Not enough at all.
My husband has since said and friends thank God you questioned it all. I could have been still sat with this man, itching (he said it would be gone within 24 hours after my first dose of Urso)
Ironically I now need that biopsy and happy to have it done as it could save my life and also a piece has been requested and is going to research hehe. Standard PBC in my opinion, it is not needed as the first port of call anyway. Look after your livers folks you maybe know as much by now as the folks with the medical degrees!
Thanks so much for the link Jo_Br,
Yeah, my hepatologist was adamant about me having the biopsy back in February. This information makes me wonder what he really knows.
Man I'm on such a roller coaster. Don't know what to think. I've been on URSO since March and my Alk-phos goes up and down 138-175. Doctor and his nurse act like that's nothing to worry about.
Am I looking for the URSO to keep my alk-phose at a "steady" low number or should it normalize it?
Apparently I can't trust their nonchalant attitude about my numbers. I have labs again in about 2 weeks.
Stella ❤
Oh I hopefully can reassure you a little, mine started at 1056, it got as low as 578 and all looked good, I was told at Addenbrookes that in a non PBC person under 100 is expected, if a person with PBC can get to 200 or under its a good thing and as normal for that patient.
Mine is rising again hence lots of rush to get to the bottom via biopsy as my diagnosis was in March, at underdose ALP was lowering, the right dose started in June, I was happy, it the lowering, lasted 6 weeks and now it is rising fast along with all the others, ALT being a new one for me to rise. GGT and Bilirubin all going up.
I know that for many any rise is worrisome, but George looks for and is happy with 200.
So maybe they are similar, but yes I would like all of us want 'normal readings'
Hi Jo_Br from what I can remember from first and only consultation is one blood test is high maybe fatty liver ( ultrasound said non ) as I'm very overweight or "something " else ! Deffo have pbc as have all markers in blood test . Not happy if biopsy is only to prove to dr that I have fatty liver , the risk of complications is too high for my liking. Hospital was fully behind my decision to cancel biopsy and when hep secretary saw the name on my letter she suggested second opinion with a different consultant !?! Hope all goes well for you , I am aware I may still need biopsy , but like you need a very good reason why before agreeing x
Yay I was worried about swaying you. I got my letter for mine yesterday, 10th November. I am in no way looking forward to it, they have been so honest about pain, complications and any information I request.
The fact that it's not one piece alarms me slightly but I have a consultant radiographer doing it, they are keeping me in for the day and monitoring every 15 minutes so all that can be done to care for me, the PBC nurse will be there and they also are doing an ultrasound, lots of blood for research purposes (agreed by me as it may help cures)
So I fully aim to be here to tell the tale after the 10th sometime.
I ranted on a bit to Ktltel above about not accepting blindly all I was told. I also asked my GP to up my Urso, gave him the PBC leaflet, highlighted all the bits I needed him to know, he did a heap of his own research and upped it, still not quite the right dose, first hep did not up it as felt it was enough. Took a liver specialist unit to do that in June.
Thank you for all info, glad I'm seeing someone I can now put all my questions too , think they should allow for a follow up appointment a couple of weeks later when you've had time to research and process information, hope you get on ok I'm following you 😄so I can see how it goes assume your in the uk ? Like me x
Yes, this is why you need a specialist unit. I am at Addenbrookes Cambridge. I am under George Mells, as I was told, if he does not know, nobody knows.
As I have this suspected variant (hoping not) they wanted to grab a piece of extra liver from the pieces taken, so a PBC hepatologist nurse rang to ask for it.
I was having 6 weeks in between appointments and by then I have about 50 questions haha. Now I have somebody to terrorise!
They get assigned for us to ask questions and she said ask anything. I said have you got any spare livers knocking about and any freebies like a pen etc?
Trouble is with the variant, no real answers as they know little, so in some ways, it's made me less anxious, nothing I can whittle, ponder and invent to ask if nobody knows hahaha.
Tag me anytime you like?
Hello, I was diagnosed 2 yrs ago with PBC, did not have a biopsy to get diagnosed. I am not a big woman I take 1,200 urso and 10 mg ocaliva daily. I am having MRI/MRCP on saturday to check my liver bile duct they say there are stones in bile duct and narrowing of bile duct. Doctor said if stones are still there they will have to come out, but did not tell me how they plan to do this.
I am 18 stone (250 lbs) i was taking 1500 urso for 20 years they just upped it to 2000 daily...hope this helps and good luck
Reading everyone's posts I count myself so lucky that I have an excellent Gastro consultant who is fully up to date about PBC and I feel well looked after by him. I've read somewhere that sometimes some doctors start patients off with a smaller dose of Urso and then increase it after a few months if there are no side effects. Perhaps this is what your doctor plans - you need to feel confident enough to ask/trust him, if you don't you need to change your doctor! On a personal note, I struggled with fatigue due to PBC but losing weight has helped me deal better with it. My general health, especially the arthritis, is better too - it's hard I know but so worth it. Good luck.