I have seen specialist today n he said I'm to have liver biopsy as I'm getting worse I have pbc and have high anas and amas don't really wan

[sophie666]

To have it done as I've heard it hasrisks anyone had this procedure I'm in uk x

[Hidden]

I am in North Wales and I have had on without a problem, didn't feel anything while they were doing it and no pain afterwards, but you do have to lie on your side for a few hours and they won't let you eat for at least 4 hours, next time i am taking butties with me :o)

don't worry

[sophie666 in reply to Hidden]

Thanks for your reply lindaclark you have reassured me that its not too bad after all I'm a terrible worrier and I know that I have to have the procedure my specialist is very good and I know I'm in good hands did they yell you what stage you were at after the biopsy ? And if so how long before you got results ? X

[Hidden in reply to Hidden]

Lying on side was not so bad. Think I was able to eat sooner.

[Hidden in reply to Hidden]

Hiya Linda.

Here's hoping that you don't have to have another biopsy in future.

[Hidden in reply to Hidden]

My too, you know what i am like, I am always hungry, I must also admit to eating a bag of quavers under the sheets when no one was looking, the girl in the bed next to me had a pasty :o)

[Hidden]

I had my biopsy on the 13th of october 2010 and the results came about november from what i can remember. when I asked my gastroenterologist about staging he said he had never heard of it and it must be a US thing, my medical records just say severe PBC, i never get my blood results printed out and given to me as they say the printers broke in the clinics dept. its now been broken for about 7 years, they are just too idle here, but my gp has just done my bloods and I know i can get a copy from him this time no problem and if there was anything wrong I know he would phone me straight away.

[sophie666 in reply to Hidden]

My specialist says he needs to know what stage im at I don't know if he will tell me or not but I get a print out of any blood tests and ct scans every time I have them my gp does this for me I'm on 750mgs of urso daily and my lfts have dropped a little since I started the urso. But not as much as they should have I have the dreaded itch n I ache all over I have good days n bad days like everyone with pbc I am so tired and have had to finish work as I sleep most of the time I used to be a taxi driver n worked 15 hours a day now I feel so ill I would love go back to work but don't have the energy. I'm 57 but feel about 90 lol waiting for a miracle cure xxx

[sophie666 in reply to sophie666]

Hi peridot I'm in Yorkshire England specialist wants to do biopsy because he thinks its progressing faster than it should andbbecause I have high anas n amas I'm getting new symptoms every day but I know there's a lot worse than me I dont really want to know what stage im at but on the other hand knowledge is good I will keep you all posted as soon as I know more xx

[littlemo in reply to sophie666]

Hi Sophie have you tried Questran for the itch? I have had PBC for 13yrs and have suffered with the dreaded itch to greater and lesser degrees. I take one sachet of Questran Light before breakfast and one after breakfast and this and few other wee tricks have learnt over the years keeps the itch at bay or to mild tolerable levels at least. BFn. x

[Hidden]

I was 57 when I first started being ill and it took them 3 years to diagnose me so I am now 63 so have had it for 6 years that I know of, and yes I itch and am in constant pain and always half asleep, I get up and want to go back to bed within two hours

[sophie666 in reply to Hidden]

I'm just the same its something I had never heard of until I found out I had it so after the initial shock I thought ok doc will give me meds n the itch will go n I will feel myself again I didn't realise all that comes with it this disease is a bad bitch lol take care lindaclark hope your symptoms ease n you get some rest wouldn't it be great to have a full nights sleep n wake up pain free I wish you well xxx

[Hidden in reply to sophie666]

No sophie666, unfortunately it doesn't seem to work like that for majority of us having the itch, diagnosed with PBC and then taking urso it goes away. For me it altered the pattern of it. I used to itch day and night but many months on from urso it changed to later at night. I used to have some nights in the earlier days of urso (been taking urso now for 3 1/2 years) when I wouldn't itch at night and I don't know why.

Regardless of the damn itch at present I am in pretty good shape and it doesn't stop me doing anything during the day this PBC. I sort of morph at night when the itch does start and a lot of nights I wake up and then can't return to sleep for feeling the itch in different places on my body. Suppose I could be worse but for now I take each day as it is and get on with life.

[Hidden]

Sophie - I had it done with no symptoms Doctor was very cautious I guess. It was easy and painless. Had minimal inflammation & no signs of PBC. However mitochondrial antibody high so he would like me on same meds. As you. Getting 2nd opinion this week. Take the test for peace of mind & knowledge. Good luck n keep me posted..

[Val02]

I've had a biopsy and it was fine. Felt a bit bruised the next day but otherwise all good.

[teddybear7]

I am due one and not wanting it. He wants to do it it confirm diagnosis. But I have so many symptoms anyway & on urso. It seems to be a tick box exercise in this area. As for staging. It all depends which bit of the liver they do it in. I have seen a professor where we had a presentation who seems to imply it's not really necessary. But it doesn't look like I've got much choice. They only keep you in 2 hours here. X

[Hidden in reply to teddybear7]

Hello teddybear7.

I think for me had the AMAs not shown in a 'high titre' back in late 2010 and the consultant was unsure I had PBC (diagnosed Dec 2010) then I would have been offered a biopsy and at the time I reckon I would have had one to confirm suspected PBC (or other).

I think though if a doctor is certain from symptons, LFTs and also AMAs present that a patient has PBC I really cannot see the reason for a biopsy being taken. As you say too, the liver biopsied might show up better or worse than the actual whole liver really is. But PBC can be shown in any part apparently due to cells.

[Hidden]

Not sure where you are sophie666.

I've never had a biopsy and I've no desire to regardless what the future holds with PBC and me. I was diagnosed with PBC due to itching and fatigue, abnormal and elevating LFTs and positive AMAs.

Doctors are curious beings I find but there must be a good reason why your specialist has requested you uptake one. Maybe it could be due to the fact that you stated you have both AMAs and also ANAs.

Apparently the procedure is quick (my late first husband had one), like Linda stated, it seems the time lying about afterwards that can be the tiresome part (I know for me I'd probably struggle as I don't do lounging about these days. I find the prickles start and then the itch which I don't normally sense if I am on the go).

Any procedure carries risks but if you are having it under local anaesthetic then it to me is probably with even less.

Best Wishes and let us all know how you get along if you choose to have it done.

[mumofthree]

Hi sophie666,

I had a biopsy in 2011 to confirm PBC and extent of liver damage. Its really not that bad, probably the worse part was having to lie still for four hours, boring! The whole biopsy procedure only takes about 15 minutes. My biopsy was done in a treatment room, I was told to lie on my back on a trolley and raise my right arm above my head, I was injected with local anaesthetic in the liver area and then with the aid of a scanner they took the liver biopsy using a long needle - so you are not left with any scar or anything. I was then taken back to the ward on the trolley and had to remain lying down for four hours, the nurses making regular observations i.e. temperature, blood pressure and checking the area for any bleeding. There is a little tenderness in the area afterwards and you are advised to take it easy for a few days.

Good luck and Best wishes for whatever you decide to do - but its really nothing to worry about.

[Axl888]

When I had my liver biopsy I was told that I would have a pain in my shoulder area about twenty minutes later. Sure enough I did. I didn't know what to do with myself. The pain was horrendous. It will take a lot of persuading for me to have another one. Apparently the liver can be different in different places so having a biopsy which is so tiny is not typical of whole liver or so I have been told. I don't know of anyone else who has had a bad experience like me though to be honest. Maybe it is because I was told I was going to get some pain that I did ... I don't know Good luck

[gaby1011]

I had a biopsy about 10 yrs. ago when my HepC was first diagnosed. I wouldn't do it again The procedure was a breeze as the other posts have said- but now that I know more about liver issues I won't put my liver through another one .I feel that cutting into an already stressed organ can only stress the liver more and I don't want to do that...

[Sonia40]

Hi, I have also been offers biopsy, I have declined as there is a procedure called fibroscan, which is suppose to be better. Please ask your consultant about it. X

[Hidden in reply to Sonia40]

As everyone probably knows now that I am against myself uptaking a biopsy if ever mentioned due to the fact that reagardless it will not change the treatment for me with PBC. (I only take urso.)

Fibroscans are supposed to be a pretty in-depth scanner and I know are being used more privately in the UK now but I think it is going to be some years before the NHS have more in supply. I know some of the private sector have them. I know where I am in Lancs locals have in the past raised money to buy certain scanning equipment for the local hospitals.

It would be worth asking about possibly travelling somewhere to have a fibroscan though as I'm sure it will be far less stressful and also it is non-invasive and no waiting about for hours following one.

For me if these fibroscans become common place in the NHS in future, my conundary then would be would I uptake as I'm not certain at present if I would want to know if I have progressed further. I just have no interest in the stages of PBC. I will go with how I feel. I think I think this way due to the fact there is currently no cure out there for PBC.

[teddybear7 in reply to Sonia40]

I ask my consultant for this and he said you can't see PBC on anything other than a biopsy. Although you will be able to see fibrosis (cirrhosis).

[sophie666]

Hi littlemo yes I have tried questan lite but I had an allergic reaction to it so I cant take it I have started putting acold damp towel on the iitch and pressing it on the itchy bits that way I dont bleed but I still scratch in my sleep lol I think the urso makes me itch as when I have taken a pill I seem to itch more oh the joys of this crap disease hope you are not in too much pain and get a good night's sleep xxx

[PBCRobert Partner]

Sophie,

Who and where is your consultant? Why is he wanting to use an outmoded form of investigation to *try* and find out what can't properly be discovered using that mode?

Liver units have ct, fibroscan, mri, colour mri and ultrsound that they use. At best, biopsy is a diagnostic tool for non AMA+ patients with suspected PBC.

Again, feel free to call us to discuss this.