Newly diagnosed with PBC

Hi all,

I am new to this site and blogging, I was searching for some info as I was diagnosed with PBC last week and came across you guys sharing information.

I am still in shock as I was also diagnosed with an incurable lung fibrosis last year, also diagnosed with underactive Thyroid and high Cholesterol in the last few months was not expecting anything else so finding out I now have PBC as well has knocked me for six.

I am being referred to a specialist for a biopsy to see how far it has progressed. I am a little worried as I have had terrible itching for years and more recently debilitating tiredness and pain in my joints (for approx 3 years).

I am having a bad time at work as they are not very compassionate and I have had a lot of time off sick in the last year, which they keep warning me about. Any helpful advice gratefully received as to what to expect, help I can get etc.

11 Replies

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  • Hiya, welcome to the site. I have had pbc for around 15 years and also suffer from the extreme fatigue and pains. The reason your work is probably not very compassionate is because of ignorance to the disease. When I was working I too had that problem so I printed off as much information as I could from the pbc foundation website and handed it my line manager, HR and Occupational Health. It certainly helped and I found that allowances were made for the fatigue and lack of concentration. Have you been given Urso yet? I found it helped. Take care :-)

  • contact thePBC Foundation pbcfoundation.org.uk they will give you all the information and the support you need as they are experts in all things PBC

  • Hi Lily-May, first take a deep breath....

    I remember when I was first diagnosed 9 years ago now, the way it was put across to me by my consultant made me think that I'd not got long left to go - PBC coupled with my blood type means that it would be very difficult for me find a transplant, and I was told that I was looking at about 7 years before that was necessary. It felt like a death sentance!

    The next month or so I did nothing else but get upset about not seeing my children grow up (they were just starting their teens at this time), and clung to my partner. Work was difficult and I had a very high pressure job - it was a very difficult if not impossible time for me.

    There were no web sites like this for me to get any kind of help, and my GP didn't know too much either, so I researched and found the PBC Foundation who provided a lot of info for me. I also found a different consultant who specialised in the condition at Kings in London, who gave me far more information and hope. Regarding URSO at the time he said "Don't really know if it's going to help - but if my sister was in your position, I would tell her to take it!", so I did.

    My attitude has always been to forget about it, until it nudges me. I kept in my job until this Christmas until I was given an opportunity to retire very early - I knew it was time, I couldn't really concentrate as I had done before. Yes, I tire easily sometimes and have other factors now too like the itch, bone and foot pain, but here I am at 9 years in with my bloods ok and I think I am doing well.

    Yes, it is difficult for others to understand PBC and its effects on you. My other half still tells me to go and have a sleep if I say I am tired - still really has no perception of what I mean by tired. Sometimes I can just feel myself shutting down then I know it is time to stop!

    I'm still really active bike ride, gym, swim and volunteer for a national charity working with young adults, so am busy - but I now control when I can and when I can't do things which has really helped. I also do a lot of travelling despite not really being covered for PBC effects, I won't let this change my life...

    Be positive and take each day as it comes, worry about it when you need to and in the middle enjoy your life - it's a great thing.

  • Thank you all for your comments, I will get in touch with the PBC foundation and take on board what you have said. I am a positive person, so now I am getting over the shock I will fight this, just need to be armed with as much info as possible to be able to help myself.

    What you've written has really helped Carolscorner, thank you. I haven't got my appt through for the consultant yet so have not been put on any drugs or given any advice, but I don't want to wait for that, I need to be doing whatever I can now to help myself.

    Unfortunately, the other conditions I have also cause extreme fatigue so I think this may be my biggest hurdle. (I have been coping with the itch for years, so that doesn't seem like such a big deal). I need to learn how to pace myself as usually I go at life full steam and then it's like I've been hit by a bus and I'm unable to function for weeks at a time. I think I need to learn to rest more - before I get to the collapsing stage.

    Making every second count....

  • I was diagnosed in Jan 2011 but it was not until May/June 2012 that I found this site and have not looked back since. I know you want to learn as much as you can about PBC... like I did when I was first diagnosed..... But what I would say is try and keep to reputable sites like the PBC foundation for your information as there is so much out of date and frightening stuff out there on the internet.

    Unfortunately for me I trawled the internet and became so frightened with the information I found I thought my days were numbered. I was absolutely terrified... I was in complete denial and became very depressed and hid myself away. All I could think about was that I would not see my children grow up.. the youngest was 10 at the time.

    I was given a PBC leaflet by the consultant at the hospital following my 12 month check up but it took me a further few months to pluck up the courage to contact the PBC foundation, they sent me a compedium and I found this site. and as I said before I have not looked back since.

    I no longer feel alone and isolated in my 'PBC world' and from hearing other peoples stories and experiences I have learned to have a more positive outlook on my life. I won't say it has been easy as it has not been....just give yourself time and listen to your body. Take each day as it comes....some days will be good, others may be very bad but by making little changes you will learn to adapt and you will cope.

    I don't beat myself up about things any more ...If I feel tired I have a sleep...sometimes a little cat nap is sufficient other times I may need a few hours..... If it takes me 2 days to clean the house when I could have done it in half a day before, so what!! When I go shopping I make sure I have plenty of coffee/comfort breaks.... I know I will suffer for a few days after from being on my feet and walking a lot...but its worth it just to do normal things!!

    Good luck and best wishes to you

  • Hi. I know how you feel I was diagnosed only mid february and boy did it shake me up. I sm now feeling very positive and alot of that has come from either reading messages on here or just simply having a rant. I contacted the pbc foundation and have rang people in my area just really to know you are not alone! Big hug and stay as positive as yiu can a day at a time :)) x

  • Hi,

    Thank you, yes I must say that finding this site has been a tremendous comfort. Also knowing there are so many people feeling the same and with the exact symptoms and sharing info and what's working or not working is really good too.

    I am having a very painful/sleepy day today but am actually more positive now I've been reading messages on here.

    Big hugs back to you too :) x

  • It seems you have already had some pretty good advise, this site has been my savour..

    My work are also frowning, so i drag my self in nearly all the time. If I take time of I make a point of saying "i worked through lunch, have been in early" which i do, so i have come back if they actually say anything. I am slightly less weary in the morning so just 20-30 minutes early adds up. My family really dont understand, it is very much"here she goes again".perhaps one day!!! My problem at the moment is upper stomach pain, eating is difficult , as I know i'll suffer. I am fiddling with my diet, and i think i can feel some improvement. Absolute misery and fatigue are a right pain,it is so hard to keep up the pretence, somedays i just cant so i go straight to bed when i get home.I am lucky i only work 4 days a week, so my weekends are re-charge days, at the moment i dont go out or do any thing. I hope this will not be a life fixture ,and when i can get my diet sorted and learn to pace my energy, i may start to live a little. Good luck Lily-May, you are not alone, in those dark lonely times log on here,it really helps me xx

  • Lily-May, I also have Interstitial Lung Disease/Usual Interstitual Pneumonitis along with PBC and 7 other autoimmune issues. My lungs are my biggest issue. With diet and medicine in 18 months I have gotton PBC numbers in normal range.

  • I too am having the same issues with work, as I've had a lot of time off sick during the last year (diagnosed April 2012). My boss is awful - insists on me being in the office 3 days a week, even though I can do my job just as well (if not better!!) working from home :( I'm tired virtually all the time, much worse after a day in the office & when really tired the itching gets really bad....

    HR just keep invoking the absence procedures - no sympathy at all...... I'm feeling very down indeed at the moment, feeling that no-one there understands.....

    Finding this site & the PBC Foundation has been an absolute God-send, reading all your questions & comments has made me realise I'm not alone in this - I have many 'virtual friends' out there :). I'm currently waiting for my Compendium to come to get more information.

    I am seeing my consultant early in April & have made the decision to then arm myself with the information from her, my compendium & yourselves & go to see OH here at work - maybe then I'll get someone to understand & come to a solution that benefits us all !!!!

    thanks & hugs to all :)

    Sue xx

  • Hi Sue, I'm fed up with my employers quoting the sickness procedure and absence percentages to me too. They don't even know about the pbc yet as I'm on annual leave this week. They have been totally unsympathetic to my lung fibrosis and thyroid conditions that also make me tired. They have started giving me warnings now when I'm off sick even though my gp gives me sick certificates to cover me, my employer doesn't take any notice of them. Think they will sack me soon.

    I really hope everything goes ok for you at work and I'm pleased you are getting so much support from this site, I've only just joined but everyone on here has been lovely and have really given me a lift already.

    Stay well and keep smiling, hugs to you :)

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