Pbc

[katkatkat]

Hi I was diagnosed last yr with pbc due too itching yellow eyes unable sleep at night strange blemishes on skin in which was told was definitely a sign and strange red speckled palms the specialist said there was abibiopsy which could have but didn't recommend due to a bleed was a lot take in when he said the word I already suffer with epilepsy asthma also said have signs of muscle wasting I'm now stuck in limbo hated telling my children but don't know what too expect next anyone can help with information please

[loveliesa2]

Hi Kat contact the PBC Foundation they will give u lots of information and support. FEAR NOT havin a diagnosis of Pbc though may be daunting certainly is not the end of the world. Just like ur Asthma and Epilepsy it can be managed and u can still live life to the full with it though maybe at a slower pace with a few hurdles along the way. I was diagnosed in 2002 but with sound advice from consultant and a prescription for Urso and then Questran Light for the awful itch I had g got on with life. I managed to hold down my job albeit eventually went part time but managed to do a full time diploma and part time degree reared my then 5yr old daughter, had another child and got married since my diagnosis. And just at end of June had a liver transplant (but that may never happen to u I hasten to add ) and so far so good am doin great and much more like my old younger self of about 15-20yrs ago! I am now 44,45 in Oct andreally loving life again. Take care and hope u feel better soon.

[Hidden]

Hello katkatkat.

If you are not aware there is a free dvd on PBC that you can request from Liver North (I got mine a few years ago now, I was diagnosed with PBC Dec 2010) then I'd log onto their website and fill out your details. I'll pop the site link on here. They are based in Newcastle here in the UK.

Sorry you were diagnosed due to a few symptons as I went to see my GP early 2010 with itching. At the time I never thought much of fatigue I had and since diagnosis at some point the following year that seems to have vanished. I get tired later afternoon some days due to broken sleep at night with the itching I still have but it is seemingly confined to night these days. In the early days it was 24/7.

I never had a biopsy for diagnosis. I had 2 symptons plus abnormal liver function test (LFTs) and abnormal GGT blood test too. I was then found to have a high titre of antibodies known as AMAs that gave diagnosis.

In the early days of PBC diagnosis it can be daunting when you know that you are stuck with this PBC for life. I struggled in the first year as firstly I didn't want to accept that I was expected to take a tablet (ursodeoxycholic acid) for life as I'd always avoided any medications unless necessary. When I received the first LFTs and GGT results 2 months after starting on the urso I saw that there was a good reading, a big reduction in them. Slowly I started to feel more together, the itching started to alter and I think perhaps my system started to slowly try to mend itself. I'd not know I had PBC if I didn't itch. My skin with itching over time has taken on a lovely bronze colour in places and my ankles and legs now seem to have toughened skinwise.

I only told my small family and a few friends who I knew it wouldn't 'get out', my local friends and those I have worked with previously do not know. I've never really been one for fussing or being fussed over. Some of my family don't really understand it at all. One member said that everyone 'gets tired at times' but I gave up explaining that with this PBC it seems a different sort of tired. It is no joke at night not being able to sleep if you are in a bit of a bad itch mode that night and you cannot lie still and are fidgeting all night.

The only advice I can give that can make you feel a bit better is to eat as healthily as possible. I thought I did pre-PBC diagnosis but since diagnosis I altered things a bit more and find that if I feel quite good most of the time. I am going through the menopause now (I am 51), started nearly 3 years ago and certain symptons like the hot flushes/flashes now seem to make me temporarily worse at times with having PBC.

As time passes and you receive better blood results and then you reach the first year since diagnosis and then another you do start to feel a lot differently. I know back in late 2010 I wasn't sure I would be here 5yrs down the line but I am almost at that mark. I am still doing well, bloods are still abnormal but I go with how I feel and compared to 2010 I am quite normal at present.

livernorth.org.uk/

[PBCFoundation PBC Foundation]

Good morning katkatkat,

I have sent you a direct message

Regards

PBC Foundation

[GrittyReads]

Hi katkatkat,

I would have a really good talk with the PBC foundation people: phone or email. I see they have already 'private messaged' you, so please take this opportunity to have a detailed talk with people who know all about the condition, and who are used to examining the facts, studying results, and helping and advising.

If it is PBC, for the vast majority who have the condition, it really is not the worrying condition that it used to be. Most of the online stuff on the web is out-of-date and overly scary.

You mention symptoms, but you don't say exactly what blood tests you had, and exactly what the results were. If you have copies of all this info, it would be good to have them to hand when you talk to the PBC F people. If you don't have copies, ask your GP or other medical people for copies of all relevant results and letters - in the UK it is your 'right' to have a copy of all results, though you may have to pay a small photocopying charge.

You cannot be diagnosed with PBC just on symptoms - they are guides only - and the ones you mention can occur with other liver conditions. There need to be at least 2 specific types of blood test to confirm PBC, unless you opt for a biopsy.

Hope this helps, and try not to worry. Stress is bad for all conditions, so take action, now, but otherwise treat yourself and have fun and really concentrate on being good to yourself and countering any stress.

Take care.

[Juamcc in reply to GrittyReads]

What two specific blood tests are you speaking of ?

[GrittyReads in reply to Juamcc]

Hi, I meant a blood test for the presence of AMAs,  as well as the bloods taken for the (lfts) liver function tests  (or liver enzymes, although other chemicals are tested for, in the lfts). 

A lot of people just talk about the test for AMAs, and seem to think that the presence of AMAs, alone, is enough for a diagnosis of PBC,  when it is not.  A lot more people have AMAs, than the % that ever go on to develop PBC, and there need to be more tests to formally diagnose PBC, in addition to the AMA being checked.

It was possibly misleading of me to talk about '2 blood tests' like this - as two separate specific blood tests - as sometimes everything is tested together and they will probably just be referred to as 'bloods'.    

I said it like that, partly: to avoid going into too much detail, too early, with someone who may not have PBC: and, partly because that is how it was reported to me - twice ... with 2 different GPs, and 2 different liver consultants.                                                                                                 [That is, some symptoms made a GP concerned, I then had a 'blood test' and the GP then told me I had AMAs, and therefore had to have more tests and see a liver consultant.  It was only after the 2nd set of blood tests that lfts were mentioned to me ... though they may have tested for both AMAs and lfts, both times]*.

However, I also talk about the 2 tests separately, as: according to the official  Eu/UK/US diagnostic criteria,  for a formal diagnosis of PBC, then  two out of three criteria have to be present.  That is:

1  Blood test that shows the presence of AMA  ...  and/or

2  Blood tests showing lft abnormalities, typical of PBC  ...   and/or

3  A biopsy showing bile duct damage in the liver consistent with PBC.

Most people are diagnosed with 1 and 2;    but 1,  AMAs alone,  is not enough to formally diagnose someone with PBC. 

*I have a bee in my bonnet about this, as 24 years ago I was told that I had AMAs, but did not have PBC as my lfts and general health were perfect.  9 years ago, a new-to-me GP, in a different area, noticed the AMA tests, panicked, had me re-tested for AMAs and sent me to another liver consultant.  My lfts were still perfect, but this chap diagnosed (labelled) me as having 'pre-symptomatic PBC'  (which does not formally exist as a diagnosis), and this played all sorts of havoc with insurance, as companies do not recognise it and I was treated as having PBC.  I had this diagnosis overturned recently, when I saw one the country's leading PBC specialists.  I still have high AMAs, but my liver function tests are still all perfect. 

I hope this answers your question.  Sorry it's so long-winded, I didn't see the point in saying all this initially, but I can see it was confusing to just talk of two blood tests.  Please 'pm' me if you want more of an explanation.

Take care,

Gritty

[Juamcc]

Thank you