Hello! PBC - I have no idea what's going on!

Hello there.

I don't know quite what to do here but I'll try my best. I'm Martin, age 41 (mental age of about 11) and a couple of months ago diagnosed with PBC.

Yes - a bloke with PBC - my Doctor seemed quite pleased he had a chap with the condition as it's quite rare. Also if it helps my location is Central Scotland.

At the moment I have diffuse cirrhosis of the liver and varices in the throat. I'm taking tablets for the varices (propanolol) but nothing for the PBC. I'm booked up for regular endoscope exams and seeing the gastroenteritis doctor again in September. He seems to expect at some point that my cirrhosis will develop tumours but blood tests will show this up.

As I say it's my first proper blog post. Hello to everyone with this condition! I'm having a really hard time with my missus who just does not want to hear anything about it.

11 Replies

  • Hello Mitzlock, welcome to this site.

    There are several males on this site with PBC as I have previously read their contributions.

    I can't work out why you haven't been given urso as that is standard for PBC. I was diagnosed Dec 2010 and started on urso. During 2010 I started with the itch and felt very fatigued. My liver function bloods came up abnormal and then it all started rolling on from there to 8 months later having the diagnosis.

    I had only been married 9 months when I started with the itch and due to the work load I had at the time in a full-time job, didn't think much about it when coming home at the end of a long day and just drifting off in a deep sleep.

    I am fortunate that my husband took it seriously. He took it even moreso when I had the first hospital appt following diagnose (Feb 2011) when he said that 'PBC can lead to transplant' as I knew that but never filled him in on that. I think it is far better your wife hearing it from the hospital doctor or GP's mouth and even though it can be daunting to hear, it is a bit of a sharp shock.

    I've been taking urso now over 2 years and my bloods have improved somewhat. They probably won't ever return to normal range as some PBC patients' bloods can with urso but I'm in pretty great shape (I'm now 49) and try to look after myself even better than I thought I did prior to ever starting with the itch (which is still with me at night-time unfortunately - but for now that is all I do have, the fatigue has long since left me).

    Hang in there and keep us all posted.

  • Hallo! I know, it sounds crazy, but try not to think about this all the time. The first months onecan go crazy with this news, but it will disappear. Try to change Your lifestíle, keep a liver diet. In Brittain You have a good organisation and centre here our colleagues will share the address with You (please!) and You will have all needed infos. I'm in this about 15 years, but diagnosed only 1 yr ago, on urso for 3 yrs. After 4 months of using only coconut oil my last blood test was great, never so good since 1998! When YOu get any info from the centre, You can show You to Your wife, it will help. And tell her tenderly about Your fears and the facts, she is escaping from bad news, but that's a very healthy and common reaction, and it will change. Please, try to believe, there can be even a long and not bad life after the diagnose. It's important to find nice moments and let joy enter our life. Be better!

  • Hi Martin,

    Do join pbcfoundation.org.uk (free) for accurate information about PBC and a voice at the end of the phone if you need it.

    If you read back at some of the blogs you will realise that everyone is different in the way PBC affects their life and there is a lot of conflicting information given by doctors. The idea that cirrhosis will turn into tumours is a new one to me but perhaps other people have heard this. I too am surprised that you haven`t been started on Urso, the only recommended drug for PBC.

    I`m 72 and am lucky that my PBC is under control. I have all the check ups and test my consultant wants, I walk and eat sensibly and then just get on with life which is good.

    To be told you have PBC is a shock and it takes a while to get used to the idea but a lot of people are in the same boat and will be paddling along with you.

  • Hi Martin and welcome to the site. I'd recommend you join the PBC Foundation (find the website at pbcfoundation.org.uk). They will send you a pack which contains a book full of information for your wife to read. They also have a newsletter with information about support groups in your area. And you can ask Collette (the Foundation's founder) anything and she'll try to help. When you've been on this site a bit, you'll find that most of us have experienced the lack of understanding from one party or another!

  • Hi Martin, login to the liver north site and request a DVD that they have produced, it gives you loads of information about PBC, you can watch it with your wife and family, it really helps to answer any questions you may have, I found it very comforting and reassuring, it also helped to reassure my husband and family. Also join the pbc foundation, you can also contact Colette from the foundation with any specific questions. Easy to say, but try not to worry, as others have said, once the shock lessens you will live with this PBC much in the way you did before you knew you had it. Hopefully one of our male members will post and give you some input.

  • What can I say! Thanks for all the kind messages and support. And thanks for the links to the various websites- i.e. LiverNorth and the PBC Foundation. I can't believe I couldn't find these sites myself. I'll put it down to a crappy search engine!

    I've a lot to read up so I'll be back soon. Thanks again to everyone!

  • Queen Elizabeth, Birmingham also has PBC on their website and you can look at their current newsletter.

    There is also the British Liver Trust but I sometimes find it hit and miss at downloading their current newsletter.

    I do receive the PBC Foundation newsletter at intervals but also find the LiverNorth a good site as you can look at their newsletters on there and reading the last one recently, there is about to be uploaded the latest one.

    Altho' I do glance through these newsletters, I pick up on certain things but two and half years on from diagnose now, I have to say I don't take it all to heart these days. I'm one that thinks I'd rather hit things as they come along and not dwell on them now otherwise I'll only lose out on the here and now. Life is precious, I knew this a long time ago as I was widowed before I reached aged 30 so I certainly do not want to waste time thinking about PBC.

  • don't worry about not knowing what's going on! You are in good company - none of us do :-) And good luck!

  • I was diagnosed with PBC years ago. But as it was an extra after I had had many other labels I didnt really bother to find out more.

    Now that many of the health service functions we have come to appreciate over the last few years seem to be under threat, I feel that access to info is all important. If we are referred back to GPs I cant see them having much knowledge. It has been reassuring to know I was being cared for by an expert in the field. I only hope it can continue.

    Thanks for the links. I am sure they will come in useful

  • Hello there! Waving from elsewhere in Central Scotland! slightly north of 'proper' CS anyway, but I'll always be a Glesca girl at heart! i'd say where i am but unsure about outing myself in public, esp as I may want to moan about consultant shortly .... I have PBC/AIH type thing, and am female - I had initial dx of PSC a decade ago, which is mainly a 'boy thing', so i do get what you say about having something that happens mainly to those of opposite sex. I'm also not on URSO, as my cons seems to be treating the AIH bit - at present toiling on steroids (lots of side effects and feel pretty ghastly much of the time), to begin immunosupps soon, probably azathioprine. Since getting my latest label and coming on here, which isof course mainly women though there are men about, as others have said, I've seen a marked difference in the 'nurturingness' of a mainly female forum. Just a different way fo dealing with the issues, I think.

    I'm sorry your wife/partner is finding it hard to 'listen' - I wonder if it's fear that's making her like this. it'sa huge thing to take on for family as well as patient, esp as you are clearly having symptoms of your disease already. It's also quite a hard disease to understand - most people have never heard of 'autoimmune' anything, i find, even though AI disease in general is very common. I found, bec my dx was a bit vague for a while, and I had no progression, and a different opinion almost every time I spoke to a doctor about it, my husband knid of switched off. He told me last year when I had a serious flare up that he thought it had all gone away. If only ..... Now I have fibrosis he is taking it more seriously, though not sure he actually wants to talk about it, or really understands what is going on. Oh well.

  • I was diagnosed with PBC while being treated for Raynauds, scleroderma and arthritis. My Rheumatologist told me at a review and suggested contacting the PBC Foundation. I did and I got great information from them. They sent me a ring binder of 'Living with PBC' which I let my GP read as he admitted he didn't know much about PBC. At the minute I have, anaemia; arthritis, asthma, depression, fibromyalgia, hiatis hernia, insomnia, migraine, PBC, Raynauds, sciatica and scleroderma. Over the last few mths I have lost 2 stone without trying, my blood is low and I started taking nose bleeds, also my neck glands were swollen. They have just ruled out lyphoma and are now testing for celiac disease. I don't want more illness but it would just be good to find out what it is and treat it. Not sure any of this is of any use to you. I waffle. :-)

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