Biopsy

[jewelsspeak]

Good morning after five anxious weeks waiting for a biopsy I am finally going in today! Get today over with another step done on the pbc journey!

[Kaywal]

All the best with the biopsy jewelsspeak. I had one a couple of years ago and it was absolutely fine couldn't feel a thing. If it's for diagnosis, I phoned for my results the week after rather than waiting four weeks for consultation x

[jewelsspeak]

Thanks back home and it much better than I expected. The recovery of six hours on your side was worse! I've just found out initial prescription of urso which is helpful to know ast doc shd have prescribed me a month ago! 300ml twice a day- how does this compare with others ??

[Hidden in reply to jewelsspeak]

Hello.

Urso apparently goes off your weight and what mgs the doctor prescribes. The hospital consultant informed the GP to tell me the diagnose of PBC end 2010 and to prescribe urso at 10mgs per kg of body weight. It was round off to 60kgs as I'm several pounds under that so I take 2 x 300mgs daily. Out of interest is yours URDOX? Mine used to say this on the packaging but not anymore, something to do with being cheaper to the NHS without brand name. I struggle to get mine at the chemists, normally they have to be ordered as it seems another brand is well, how can I put it, 'more "popular"'.

Glad your biopsy went ok. Did you have yours due to PBC being questionable? I had a scan and then a couple months later the AMA (& ANA). The AMA was positive, ANA negative. PBC was then diagnosed. Not had a biopsy, no desire ever to do regardless. Seems norm in the States after diagnose but here in England appears if a diagnose can be questionable.

[jewelsspeak in reply to Hidden]

Evening thanks for reply which is very helpful. my consultant has sent me for biopsy to mainly check for any damage etc but yes to confirm. I did ask what if biopsy comes back and doesn't confirm PbC - he replied he was adament it was as all other results were positive for it and that he had been involved in lots of research for pbc and he would be very surprised if it wasn't. I'm still very new to all the measures of levels etc to the point I didn't even ask at last visit as that shocked at the news. I've now got my diary book that will be my bible to record everything. get my prescription tomo but as u said with yours it had to be ordered in specially. My autoimmune was def positive. I Hve also got Gilberts, which is unrelated to pbc but nevertheless another liver problem and I'm sure when I had hpylori six years ago this hasn't helped! The biopsy wasn't as bad as expected was painless really just little uncomfortable today. Hope you are keeping well . Regards

[Hidden in reply to jewelsspeak]

What I started doing was asking for my blood results in print-out. I originally had cause to enquire back to the hospital consultant's letter to me about Vit D levels at the time (Oct 2010). He put that they were 'a bit low but not too bad'. That was as clear as mud to me so I rang the doctor's secretary and asked her what 'a bit low' meant and was there a figure to go by. She said she'd send me the results so I could see.

I started asking for the results from then on as on them they do state what is supposed to be the normal ranges so you can see yourself. I don't get hung up about them when I receive the results. I admit at the beginning back early 2011 I did scrutinize them a bit more but over the last yr I've not taken too much notice. I do know that it seems they have have a period of 6mths where they have gone on the increase slightly but then they have started to decrease rapidly, hence no point in getting hung up about them as not much one can really do.

I do take milk thistle, did an experiment myself prior to May 2012 after a notso good blood result Feb 2012. I got a good result. I stopped the milk thistle as wasn't quite sure but then got a slight increase Oct 2012 so started on them again Dec and my current bloodwork was pretty great, in fact the best so far in the 26 months at the time I had been on urso.

I did ask last yr when I saw the GP at med review what could be considered normal with PBC and apparently there is a different scale for us and mine are apparently within the normal range for that so I'm not worried.

It took me some debating with the GP regards getting blood print outs each time I had the LFTs and FBC done each time. It seemed such a big thing like it was top secret but I do think in my opinion regardless of not being able to change anything much, it can help seeing figures.

I'm keeping pretty much in excellent condition currently. The only thing I do get are persistent nights of itching but these days it doesn't seem as bad as it used to do. You didn't say if you had devloped the itch, if you haven't I hope you are one of the luckier ones who never does as it is pretty unpleasant and irritating as others on here can tell you and also it is the ONLY thing others with the itch of PBC know what it is really like too.

Best Wishes.

[BethanD]

So glad it went well for you, these things are always nerve wracking as a new experience. Mine was not so good, probably because it was the first time the young man had done one! My GP was great though and told me the results over the phone as soon as they came through. This was 8years ago and the deterioration is slow with small set backs on the way and the amount of Urso increasing as necessary along the way.

Stay as positive as you can Jewelsspeak it will help you and others around you too.

Kind regards x

[jewelsspeak]

Thank you Bethand. today is a new day! Keep well x

[Hidden]

Glad it went well... I take 750 urso a day, think it is worked out on weight. Hopefully that will have a positive effect for you.

Lou

[jewelsspeak in reply to Hidden]

Thank u. The bloating of stomach and tiredness are my main issues, slight itching nothing too unbearable at present . I've read conflicting results on how affective the medication can be but I'm open minded about it!

[Hidden in reply to jewelsspeak]

I have always been optimistic about urso and have to say that I still am. I almost gave up taking it in the beginning due to a couple side-effects in the first few months (heartburn and a bit of bloating) and I did think at the start the itch seemed more intense but the first blood test 2mths after starting on urso came back looking pretty great so I have continued taking them.

[Hidden in reply to jewelsspeak]

HI

Urso works for me, my bloods are almost back to normal...... You have to give it a go and see what happens. Give it a few months if not longer.

I started on the capsules but have to have the tablets and always have to watch the chemists as they do tend to dish out the normal capsule - Ursofak, I think it is called.

I know lots of people still complain about the itch etc even on urso. keep us posted.

Lou

[nellysarmiento]

Hello

Are in England or America?n

PBC, my consultant does not want to do biopsy as yet, although positive ANA and AMA in 2 different hospitals, syntomatic yes, itchying, pain in my joints especially my hands every morning, fatigue, however normal liver by ultrasound and MRI, slightly high leves for the liver function, do you think they should do the biopsy to diagnose.

Anybody has pains in the hands joints every morning, and anything to alieviate this pain, already taking malaria tablets no luck at all, tried the homoephatic remedies an also nothing ...if anyone can help will be much appreciated.

thanks