Finally have a diagnosis.

[AllieCraw]

I Had my biopsy on June 28th and it was an awful experience, the Dr apparently did not take a big enough piece and although they can confirm that it is pbc and it is severe, they cannot tell me what stage I am in as the sample was too small. He didn't go in through the side. He went in through my chest and took two samples. I will not be doing that again, hopefully. I am awaiting an appointment with the liver clinic. I did see a liver specialist that was here at my hospital for a few weeks, but that was before my results were in.

My GP thought that he liver specialist might have other ways to stage my disease, I don't know. I might have to wait for months to see them but hopefully they will have more answers on that regard.

I have been given 1500 mgs of Urso day and cholestyramine for the itching. The Urso makes me feel a little nauseous and I seem to be more tired too.

Hopefully this will pass.

Not sure what this disease means for me, but I have been immunized against, pneumonia, hep b and the flu. My doctor was concerned about me getting sick and putting strain on my liver.

I was hoping somehow that it was all a mistake and they would find something simple for a reasoning for my enzyme levels but at least now I know.

so, while I feel good and hopefully that will be for a long time, I am making my bucket list and living in the moment.

[Hidden]

Hello AllieCraw.

I was diagnosed with PBC without a biopsy due to having at the time itching and fatigue in 2010. I had abnormal blood results and then it was found I had a high titre of antibodies that gave me to be diagnosed with PBC via my consultant. I am in the UK and suspect you might be too.

I had a scan a few months prior to seeing the consultant for the first appointment late 2010. The scan showed me to have pretty normal looking liver and the consultant looked over the result when I saw him and said he could make out clear bile ducts. He reckoned from this after he diagnosed me December 2010 that I had only had PBC 'a few years'.

I have no staging of PBC and quite frankly I am not interested. There is a bit of controversy surrounding staging of PBC with biopsy due to the liver being a large organ and the biopsy site might not be an accurate picture as we can be damaged in one part of the liver (or I expect several areas maybe) and not others due to the liver being able to regenerate itself so I personally don't think biopsy is a correct way but it can apparently show PBC due to cell changes that are said to be throughout the liver with this condition. i expect a biopsy can also show cirrhosis as I believe with this it is spread throughout.

I'd not agree to a biopsy now if I was offered one as at the end of the day once you are diagnosed with PBC it will not alter treatment. I am pretty certain too from a tv programme I saw a couple or so months prior to my diagnosis that an ultrasound can give a decent picture. It featured live on air 2 guys, one was I believe late 30s and quite overweight, his scan was discussed with him and he was shown to have a fatty liver, the other man was early 50s and said to be alcoholic and he was showing signs of cirrhosis.

I encountered a few initial side-effects on starting the urso December 2010. I had a bit of tummy bloating and developed heartburn and also started to become constipated. These vanished within a few months of taking urso but constipation did persist but I just adjusted my diet to include even more fibre and have been OK.

Try taking your urso in spaced doses to begin with if you aren't doing. I started mine with 300mgs with breakfast and then I took the remainder around 9p.m. with dry biscuits. I've experimented with my urso since I started and found that my original plan seems to be the best. I did find the itch to be a bit more persistent in the early days of urso but over time it had altered and I tend to be stuck with it later at night right through the early hours of the morning until around 6a.m. I did once try taking all the urso at once of a mroning but I found a couple hours later I was itching badly which is something I don't normally do. I think in some cases the itch doesn't perhaps vanish as the urso can cause itching (or pruritis as it is known) and with improved bile flow though it improves it sort of cancels each other out so we are stuck with it. The itch and also fatigue are said not to be any sign of staging of PBC apparently as some develop it, others never do. Fatigue for me vanished at some point in 2011 but I get tired later afternoon as I tend to have broken sleep due to itching at night.

[AllieCraw in reply to Hidden]

Peridot,

Hi. Thanks for your response, it is interesting to see how so many of us have the same disease but it is different with everyone. I live in Canada.

I will try taking my urso separately and hope that will help out. Thanks so much

[butterflyEi]

Hello AllieCraw

Welcome to this group. There are a great bunch of people on here with good hearts and I am sure you will find a good deal on here to be of interest.

I was diagnosed over ten years ago and was given a biopsy which with the dimming of time I only remember very vaguely. I seem to remember having to stay in the hospital for the day but I did not feel unwell and was champing at the bit to go home. From this site I have learned that it is a procedure that I should have rested after. I have also learned from a video produced by the PBC Foundation

(pbcfoundation.org.uk/)

that if you ask for a light sedative it eases the discomfort. Explanations were a bit thin on the ground or perhaps I was not listening! Anyway fortunately that is behind us now. I understand that in England there is a company promoting the use of MRI scan instead of liver biopsy but I think it is already in use in the USA.

I am also on 1500mgs daily (recently had the dose increased due weight) and over the years I have tried taking it at various times of the day. When I was on the lower dose I took two in the morning and two at night but unfortunately when the dose was increased I started to itch at the same time, whether this is due to the increased dose or another external factor I do not know. Nearly 6 months after the itching started at a level I could not tolerate (been on anti histamines for years) I was prescribed Cholestyramine in the guise of Questran Light. I have been taking this for about a month now and the itching is tolerable again. I tried taking two sachets in a day but my body did not like it so am only taking one sachet. So there is medication out there to help us but none of it is a cure.

You say to Peridot that you live in Canada, I have copied another link here which may be of interest to you.

pbc-society.ca/welcome.html

also in America the PBCers Organisation

pbcers.org/

I like the sound of your bucket list, hope you have fun.

best wishes

[AllieCraw in reply to butterflyEi]

Thank you so much for the link, I will definitely check them out.

I had an MRI last year, they were ruling out primary sclerosing cholangitis and then needed the biopsy for confirmation of PBC as my blood-work was negative. I take one sachet of the cholestyramine, it is not very tasty, lol. It does seem to work though, although summer and bug bite season does make it harder to not scratch and itch.

Best wishes to you as well

[dollydaydreams]

Hi ask your liver doctor for a fibroscan as that will tell him if you have scaring to your liver, also I was told severe active PBC after my biopsy and that was in 2010, so please don't worry. I had a fibroscan a couple of months ago and the nurse told me the result immediately.

[AllieCraw in reply to dollydaydreams]

Thanks.

I don't have a liver doctor yet, I am on a waiting list to see one, I only have my GP and we had a liver specialist who was in our hospital for six weeks, I saw him, but will have to wait to go to the liver clinic, but I will definitely ask them. Thank you.

[Becca75]

sorry you've been diagnosed; I hope they can stage it for you. I'm surprised the biopsy wasn't take through the side. Sorry that was such a bad experience for you

Sounds like your GP is following you pretty closely so that's good.

[AllieCraw in reply to Becca75]

Thanks Becca. I think my GP feels bad that she didn't follow up on tests from last year, so now she is paying a little more attention to me. I have to admit, I wasn't as concerned with my health last year as my mom was battling cancer and I had to be there for her as much as possible, I wanted to spend every last minute I could with her before she was gone and I didn't want her to have any clue that I was sick. But now, it's time to take care of me and that's what I am doing.

[Becca75 in reply to AllieCraw]

you were focused on what you needed to be focused on last year - now you can process what's going on with you....and it's not a bad thing for your dr to pay more attention.

I had gone through at least 3 GP's (who'd left the city for various reasons) and no one followed up on my liver tests when I outright asked for it. The family dr I have now did so right away when I brought it up. He referred me to a liver specialist right away when he didn't have an answer.

I'm glad she's watching closely now!

[Wilmahair]

I have had about three biopsies when I have had abdominal surgeries. But the first was the absolute scariest experience. It was done from my neck in to my jugular vein down through my heart and down to my liver. I was awake and very uncomfortable for the whole procedure. Would not wish it on my worst enemy. I was totally traumatised by the experience. I too take ursofalk 1500mg daily and have them with food three times a day. With out food also makes me feel sickly and they are absolutely disgusting if you burp soon after taking them so with food seems to stop this problem.

Hope your itching settles for you. I have a jolly good scratch when I undress and then I seem to get a decent night with out too much itch but then I am on a nerve blocking medication so maybe this helps me.

I have had pbc for at least 16 to 17 years. Funny my memory is the worst to suffer with my pbc. Lol

Best of luck with your pbc journey.

Wilma.

[AllieCraw in reply to Wilmahair]

Thank you Wilma. I hope all is well with you as well.

[Hidden]

Biopsy results are okay for diagnosing what is wrong but not for how severe something is as one patch on the liver can be bad and another bit be good.

I had my biopsy 17yrs ago and that was supposedly a stage 4 back then.your blood tests will probably be a more accurate guide.best wishes cazer.

[Jackie71 in reply to Hidden]

That's interesting I had biopsy 6 years ago when diagnosed and the experience not pleasant as went via neck, the conclusion was stage 4 which does give you a big wobble but over the years my blood results have got better with one major hiccup that no one really got to the bottom of. Have to admit as long as I watch what I eat I can be fine but the fatigue is an issue. The fact that you were diagnosed so long ago has certainly inspired me.

[AllieCraw in reply to Hidden]

Cazer,

I guess what I take from this group is with proper care I will be around for many years. I have already changed my diet to include less fatty foods and am already on a workout regime. Thank you for your words

[Hidden]

Yes i always think i could get something much worse and my son who was a premature baby when i was first diagnosed is now 17 and his older brothers and sister are all doing well despite my difficulties and i am very grateful to have been able to see them grow up.

I am now heading closer to being listed for transplant but i feel positive about this and hope it will b a new lease of life.

Try and be positive it is scary in the beginning but gets easier

My best advice is be kind to yourself enjoy your life.love your family and friends and try your best to ignore pbc...it is so variable for each person some never need transplant and have very mild symptoms.l did find even in my twentys i could not tolerate alcohol so not the cause of my troubles but an indication that all was not right 30 years ago.

I send you all my good thoughts and best wishes in vulcan....live long and prosper....ha ha..(from star trek)in case you think im complete looneytune.x