What now?

[Cymru2009]

I have been told a blood test found the antibody. Now going for a scan. Previous scan found enlargement after bloods repeatedly show signs of liver damage. I gave up drinking 8 months ago. But after after an initial improvement after one month of not drinking a second test five months later showed bloods stayed same so they did more bloid tests and found this antibody. For couple of months I had itchy rash on legs which a doctor told me was caused by alcohol damage to liver. That stopped about a week later ie in January. I've had other things which now seem to be symptoms such as trouble with tear ducts, dry eyes, which I put down to asthma, ache on right side below ribs, floating stools, bloating etc. I am now wondering if other problems such as asthma, new food allergies, oesophagal reflux that left me hospitalised, might all be symptoms. But this has been over the last 15 to 20 years! I feel absolutely fine but am now worried that I basically have only say less than 10 years if that. I am 57. What do I do now?

[Gioielli]

Hi Cymru2009, Have you been diagnosed yet for PBC? Sounds like you are one of us. Once on the Urso you should start finding improvements. Take care.

[badpiglet]

Hi Cymru2009,

At least you still feel fine - but worry can definitely make you feel ill so it might pay to get the facts together and then do some research but, importantly, not by googling random sites that are out of date or inaccurate. Pick the sites you look at carefully.

I'd ask for copies of all your tests (in the UK you're entitled to them and it's easy to ask your GP's receptionist). Then maybe begin to try to understand what the tests are, how they're measured and exactly what your results are. Also get copies of any doctor's letters giving any and all diagnosis.

A good site to help understanding UK tests is

labtestsonline.org.uk/under...

Once you've got your test results in front of you and you know exactly which antibodies have been found, then I'd definitely contact the PBC foundation (they're free to join, the link is at the top of the page and they have a lot of useful info available and have friendly, knowledgeable, helpful people at the end of a telephone!). They will be able to advise further if it seems likely that you might or might not have PBC.

Another site is

britishlivertrust.org.uk/

Try not to worry too much as you say you still feel fine and, if it's PBC, it can be a very, very slow moving condition.

[Hidden in reply to badpiglet]

I always request a print-out of my bloods each time badpiglet so I can see for myself. I don't bother much these daysand refuse to dwell if not as good as the last ones. (Mine seem to bounce up and down a bit.)

I as you are probably aware now on this site, find every time I have the bloods that I find it more stressful getting the print-out from my GP surgery than anything else!

I'd not been to see the GP for PBC in 12mths and the urso was due to medication review earlier this month. So when I had the repeat bloods end June I booked the GP appt with intent on 'killing 2 birds with 1 stone' and wasn't sure if I would be wasting an appointment. I went and said I'd not been in 12mths. The GP seemed quite OK with it and said that unless a problem with the blood results it is expected I go in at intervals if I've not been for awhile. For the first time she actually printed out the results for me there and then and unlike a year ago didn't say I could collect them at the reception desk later in the day.

[Hidden]

Hello Cymru2009.

Have you actually been diagnosed with PBC. I can't say regarding antibodies as I know when I had the antibodies check back in 2010 when I was diagnosed Dec 2010 with PBC (I was 46) my AMA (anti-mitochondria antibodies) was showing a 'high titre' of them and my ANA (the anti-nuclear) was negative. I don't know the significance of the ANAs but know some to this site have mentioned they have had positive readings of them as well.

I followed a pretty routine pathway to diagnosis. I started to itch in early 2010 and though fatigued, never thought anything of it. They were my only symptons really. I was found to abnormal LFTs. Got asked about alcohol then but was never much of a drinker and hadn't since the festive season several months before. Repeat bloods showed the LFTs to be increasing slowly. I had a scan 3 months later that showed my liver and surrounding organs to look pretty much normal. GP exhausted various other blood tests that he could perform so got hospital referral. I had my first hospital appointment at the start of Nov 2010 and that day I had repeat bloods as well as the GGT one that tends to show being abnormal as mine was and also antibodies checks. I was diagnosed with PBC and started on urso.

Have you at all been prescribed ursodeoxycholic acid (urso for short) as yet?

Your symptons seem to correlate with PBC but you need to have a difinte diagnosis now by the sounds.

All we can do once PBC diagnosed is to take even mor care of ourselves than we thought we might have done previously. There are a few good sites that cover PBC, the Foundation is one. There is also another one that tends to cover a lot on PBC too, that's Liver North. They can send out a free dvd all about PBC if you fill out the details online.

Hard to say to someone if newly diagnosed with PBC but it takes time to start getting back on track with your life and accepting that you have something that currently has no cure for. I wasn't sure if I'd still be around 5 years down the line after being informed I had PBC but here I am and my bloods though still abnormal they are much much better than they originally was pre-urso. I feel pretty fantastic, fatigue for me vanished in 2011 but I still have the itch that over time shifted to just night. I do find that there are certain things I now avoid but nothing major (ie can't see myself ever sitting through a film or theatre play at night anymore, find get prickly and then itchy) but on the whole I am enjoying life.

My motto is to get on with life, do things you want to do, make the memories as there are no guarantees in life and myself being PBC diagnosed does tell you not to let time slip by without fulfilling it.

I don't care about stages in PBC that some mention. I feel confident by ultrasound that it can be known how I am doing regarding how my liver is looking. I don't think about the future of PBC, I would rather enjoy life now and not worry as that worrying might be needless as it might never happen. Seems with PBC anything may or may not occur.