PBC Foundation

newly diagnosed today

GP has confirmed I tested positive for AMA today, he said it is highly indicative of PBC. I am being referred to liver specialist, GP said he could not start me on medication. I am in shock as I am completely asymptomatic. I think I am coping, then I am in tears. How did others manage when they were first given this news.

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Hey, don't waste good energy on depression :). After the first shock you must know there are many out there, this is NOT a death sentence, you can have a very good life still, and that you are asymptomatic is F-A-B-U-L-O-U-S.

Please, get in touch with the PBC Foundation - info@pbcfoundation.org.uk, pbcfoundation.org.uk.

:) I am PBCF's volunteer in Romania and did the AMA test yesterday, awaiting news... :) Chin up, as Collette, the CEO of the PBCF said recently, there is huge hope and reason to enjoy life, still.

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I'm sorry to hear you have been given this news, it must be such a shock especially as you are asymptomatic, but Christina is so right, the fact you are asymptomatic is a real positive sign.

How did all this come about that your GP was testing your AMA?

There is so much support and info available to you from the PBC foundation, they have produced a compendum which gives good clear info, if you get intouch they will send you a copy. the team there are very helpful and easy to talk to.

Try not to panic....easier said than done I know! when i first had my diagnosis confirmed i began sleeping with my youngest child because i was scared that he would forget me, i thought i had been given a death sentance!

The usual course of treatment is ursodeoxycholic acid, this is used to slow the progression of the disease, there are other meds used to help the symptoms and most people begin taking vit c/d to help reduce the risk of osteoporosis.

The internet has a wealth of info, infact my husband diagnosed me with the info he found on there, BUT he was also on the verge of writing out funeral invites for me, so please dont waste your emotions on ploughing through info on there as there has been so much progress that much of the info is outdated and inaccurate and will only leave you anxious, write yourself a list of questions and talk them through with the PBC foundation (theyre not medically trained but have a wealth of experience) while you wait for your appointment with your liver specialist...have you any idea how long you will have to wait?

you will find lots of support here, where you can air your worries and thoughts.

take care.x

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On a positive note, they say that most of us will die with PBC and not from it. Try and stay positive. Take care. x

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I was diagnosed 6 months ago. I am also asymptomatic. I still oscillate between feeling positive, feeling angry and pretending to myself it hasn't happened - proper head in sand stuff!

My top tips so far:

- Don't google it !- Don't read anything other than info from the PBC foundation.As it's a rare condition there is so much inaccurate info out there. It's terrifiying and just plain wrong.

- Count your blessings. If like me you're asymptomatic I try to remind myself - I'm not in pain and can still do things - so in that respect there are worse diseases out there!

- Try not to think about too much- easier said than done - but all that worry won't change anything just make you feel rubbish.

- In the spirit of "accept the things you can't change, change the things you can" Look after yourself - eat well, keep the alcohol in moderation etc all the common sence stuff.

- get to a PBC meeting if you can. There's nothing like meeting someone who's been diagnosed for 30 years and still OK for reassurance.

- as everyone else has said contact the pbc foundation. They are great!

- Don't panic!

Take care xxx

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Great post! x

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Hi donkey

There's not much more I can add...you've received some excellent advice already....Its so easy to fall into the trap of depression, I went through a rollercoaster of emotions, denial, wanting to cut myself off from the world, the feeling of being alone...It will take time to adjust but as others have said it does not mean you have a death sentence....keep positive and live life to the full...don't trawl the internet....stick to reputable sites i.e PBC foundation, get that compedium its really useful...

What I will add is that you take someone with you when you go to see your liver specialist to act as an extra pair of ears and obviously to support you....You will feel a little anxcious on the day so don't forget your list of questions...your companion could also write down the replies to your questions...another good piece of advice I was given in the past is to ask for copies of your blood results for future reference for yourself to keep a check on, they may not always make sense at first but seeing different figures over time will be an indication of how your getting on especially as you are asymptomatic...6 months on URSO and my results had improved remarkably, 18 months on my levels were almost normal.

Best wishes and keep your chin up

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Well tho' it was that like final knock being informed I had PBC Dec 2010 (I went to see the GP due to the itch, no other symptons tho' at the time I felt tired), I had been doing my own bit of looking up on the liver and disorders mainly reference books at the library.

I stumbled across this PBC and then read up on it through the PBC Foundation website. I didn't think I actually had PBC and over the following 6mths to diagnose I somehow realy did think the itch would go away and it was some sort of temporary glitch possibly informing my body to slow down (as I had been working for the 6mths prior to starting with the itch full-time managerial job which was exceptionally demanding (I was eating, sleeping and waking with the tasks of the job, ie ideas for the weekly promotions area)).

It was when I finally had the AMA test at the hospital I was wondering in the 2mths leading up to getting informed I had PBC what would happen next. I had sort of resolved myself by the time I got a call from the GP saying I had to go in and be prescribed medication. I did ask the receptionist who called could she tell me what medication, I wanted to know. She attempted to pronounce the urso and I knew then what the GP was going to tell me he had received back from the hospital doctor.

It was more of a shock for my husband at the time as he had been also doing a bit of looking up himself.

I think with passing time you simply just start making a move getting on with life the best way you can and putting aside what could eventually occur. Myself, I have been informed that with PBC it can more often be the case that something else will get us eventually and not the PBC as Jtxx as stated here too.

The thing that I find the hardest as daft as it sounds is that I will carry PBC with me for the rest of my life regardless. For me it is still the fact I don't accept that I am not 100% healthy that I thought I was prior to 2010 but I think that can be a positive thing.

I know if the itch had simply vanished away when I got the urso Dec 2010 I would be going round today feeling I was back to normal again.

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Hi I fully understand your state of shock and it will take a little while to accept you have PBC. Contact the PBC Foundation and get the right information and give yourself time to get over the rollercoaster of emotions you will go through.

Everytime a newly diagnosed person posts on here my heart goes out to them...

Take Care

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Hi

I suggest you read through the questions and blogs on here. The things that are going through your mind now are things that we have all gone through at some stage or another and reading how others have coped and what questions they have asked can help answer a lot. also prepare for your appointment by writing down questions you think of as when you do get to see them it can all go by so fast and if poss take someone with you who can litsten to the answers aswell or write them down as we do tend to forget quickly.

:-)

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Thankyou all for your kind words. I am a non smoker, non drinker, active person, I went to GP for a routine NHS check expecting a clean bill of health (how wrong was I), LFT's came back elevated, scan was normal apart from 6 gall bladder polyps. GP then took AMA test which came back positive, by the time it came back I had already worked the diagnosis out for myself (as I realised the polyps would not elevate the alk phos). Being given an urgent referral to Hepatology - the wait is 50 days, wonder how long a routine referral takes? GP is going to try their best to speed this up - hope he is able too, I am keen to start the treatment. It feels very surreal at the moment, I have done normal things today (my day off from work) I went to the hairdresser, she was great she said "hey, you have been given a heads up, stop worrying about things that might not happen), I admit that I have scared myself witless looking on the internet. I also had routine appointment at the dentist. A bit apprehensive about going to work tomorrow, if everyone is overly nice to me I may just crumble.

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Hi Donkey,

I was recently diagnosed - in september. I think the most scary thing is the word 'cirrhosis' It conjures up all sorts of images. If you read the PBC foundation literature though, you will get a lot of reassurance. Cirrhosis is what happens if you do not get treated. If you are treated, as someone said above, you will have a long, interesting and happy life and PBC will just be something that reared its ugly head very rarely.

The reassuring thing for you is that your GP is definitely on the ball! You got a very quick diagnosis and that seems very unusual. If your doc is good, your experience will be much easier.

My initial reaction was one of relief because I had been very ill for about a year and was thinking all sorts of bad things. I thought i was on my way out. One of my symptoms was that my memory and concentration virtually disappeared - so i thought I had developed alzheimers. Then I started doubting my sanity - I was beginning to think it was all in my mind - even though my liver tests were telling me it was 'real'.

When the doc told me what it was, I felt much more content because once I knew what i was up against, I could start working out what my next steps should be.

I know it is not curable but I am reassured by the many stories that I have read on here and on face book. There are many illnesses that are not curable and people learn to live with them and get round them. On this forum, you will find that there is at least one person who has experienced whatever it is you are experiencing - whether it is bad doctors, bad symptoms, bad days or bad tempers. You will also hear about everyone's good days - and there are many of them.

If you are lucky, you will never experience any symptoms or your symptoms will be mild. And if you have bad times, there will be someone here or at the PBC foundation, to talk you through them.

Good luck and look after yourself

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Thank God for people like you. I have just been diagnosed Dec.21. Your words here on this post, has helped me more than anything!

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Hi Donkey, Firstly hugs.....

next, don't feel bad about the tears!!

Shock is a NATURAL process that we all go through and each person who has been given the diagnosis has been where you are...

Please know that science is giving us more information each and every day about PBC... I was diagnosed nearly 11 years ago and at that time they really thought it was a death sentence (It is not) I was given 10 years to live as that's what they thought! Last year I looked back on those last 10 years and smiled s I have smiled my way through many of them!

Many more people are being diagnosed at an asymptomatic stage and many people will die of old age still Asymptomatic!

If you do have symptoms, then you can manage them! We live with PBC but we don't become PBC .

Do join the PBC foundation, if you are in the UK, get hold of a compendium from the office and learn about PBC! There is so much fiction around about PBC and what it does and what it is, stick to the facts and you will be fine.

As for your appointment, 7 weeks may sound like a long time but unfortunately it is routine. I see my specialist every 8 weeks and have to constantly fight to get my appointment on time. If I don't mither them, then i can be left 3 months. So many people are on the lists, most hospitals just can't hope to see all patients when they would like to.

The thing is you are asymptomatic and your blood tests can't be severley abnormal otherwise they would fit you in... Also remember Alk Phos is just one of many blood tests which indicate the health of your liver. The result however is just a snap shot of the moment it is taken. The result is hugely variable, and can be altered slightly due to a number of reasons such as time of day the test is taken, a virus such as a common cold, stress etc. When a doctor reads your blood test, he will look at them over a period of time, so try not to worry too much about numbers!

Hugs once again, try and get hold of your local volunteer if you are in the Uk, and maybe pop along to one of the meetings. it is sometimes useful to meet with others in the same boat. Do however avoid online groups that support PBC in my opinion you can end up hearing way too many horror stories (not all true) and can end up surrounding yourself with people who might not have your best interest at heart at a vulnerable time n your life.

All the best and ask questions as and when they crop up.. x

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