More news :(

[Chazzy]

Another letter from consultant. I do have the AMA M2 antibody but doesn't feel my lft are raised to be of concern. So do have PBC but at early stage. Now saying wants to do a liver biopsy when I go in November. Feeling really low again and worried about the biopsy. Has anyone had one?

[kimphoebe]

Hi chazzy

Yes I v had a biopsy and it sounds worst than it is, the worst part is lying on your back for 6 hours after. So don't worry to much it's over in minutes.

[Starfish72]

Yes I had biopsy last month. It's very quick and painless. The most frustrating part is not being able to get up for 6 hours even to pee! You will be fine, the nurses were fab and try to relax and take advantage of the rest time afterwards.

[Chazzy]

Did you both get the results straight away?

[hotdog in reply to Chazzy]

No you do not hear straight away. I had one done two years go and never did hear what my results were. I just guess it showed further proof that I had PBC. So I just keep taking the urso prescribed. The only side effects I have had from PBC is slight itching and tiredness in the afternoon. I have been told by my consultant one usually dies with PBC and not from it. So I no longer worry about it and just have a yearly scan to keep an eye on things. x

[kimphoebe in reply to Chazzy]

Hi chazzy

No it took 6 months for results but it was just a formality they New I had pbc from other markers. They were just checking for overlape with aih.

[Starfish72 in reply to Chazzy]

My consultant was able to tell me what stage I was at after a couple of weeks and that I also had an overlapping autoimmune disease.

[Rosehip19]

When I was diagnosed, some 15 years ago, my consultant said the next step would be a biopsy. Then I spoke to Collette at the PBC Foundation. She said that biopsies were not strictly necessary, and we were perfectly within our rights to refuse to have one. I changed consultants at that point. My instinct was that it is not a good idea to poke about with an already sick liver! I still haven't had one. My AMA results were (and still are) plenty high enough for a diagnosis. Not saying you shouldn't have the biopsy, Chazzy, just that you have a choice. All the best, whatever you decide.

[2bear in reply to Rosehip19]

Amen

[GrittyReads]

Hi Chazzy,

If you are in the UK, the biggest nuisance about a biopsy is the waiting time and that you would have to declare that you were waiting for it on any Travel Insurance. Being diagnosed with PBC will put your premium up, but waiting for a biopsy will add to it. Even if you've barely got PBC they make you answer all the questions, so if you are not taking Urso yet, that will also help keep things down.

But, if you only have AMAs, and as yet your raised LFTs are marginal, I would have the biopsy. At least you will know, fully, where you stand, and it may be that it will show you don't have PBC. Just having AMAs - no matter how high the level - does not mean you have PBC, and as you only had one dodgy lft reading, it's possible you don't have it. NB the lfts can fluctuate, especially GGT in more 'mature' women.

[Chazzy in reply to GrittyReads]

Do you really think? I think ur right about having it, can't do any harm can it?

[Michiganpbc]

I had one it wasn't bad just a little sore after in that spot where they took the biopsy from for a couple weeks, I asked why I needed one if my labs all pointed to having PBC she said to stage the disease, I agree I wanted to know what stage I was in, don't worry too much odds are you will do fine good luck to you let us know how it went.

[Chazzy in reply to Michiganpbc]

Not til November nothing seems

To move quickly! thank you xx

[Zelda5]

It was a piece of cake for me and I only had to lay on my side for an hour afterwards and then ate something then was released shortly after that. Like others have said that's the worst part. I could be wrong , but I think the prothrombin time test they do before a biopsy, which if I remember right tells them how well your blood clots, and also, where your from and the dr themselves determines how long you have to wait after a liver biopsy. I think the UK might be a bit more cautious than the US is, as far as biopsies go too. In early stage PBC, a biopsy may not be very accurate because it depends on if they hit on a spot that is affected, but it is the most accurate way of knowing, but I wouldn't want to put all of my eggs into one basket. I'd think in addition to lft change and biopsy. I would like either more samples of the liver taken, if it's not too risky that is, or other testing done such as a MRI, fibroscan etc. That's just my opinion. Good luck with everything!

[Chazzy in reply to Zelda5]

Thank you. Wish it was sooner so could know what's going on.