Hi I have just been diagnosed with pbc - PBC Foundation

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Hi I have just been diagnosed with pbc

Kimmy1972
Kimmy1972

Hi I am 43 with 2 children and have just been diagnosed with pbc I feel so worried and frightened did any one else feel like that x

17 Replies
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Hi Kimmy1972, When I was diagnosed I was coming to terms with having a heart attack at 55.No obvious health issues for 5 years before. When my gp told me I had pbc ,he told me casually really and said I'd probably still be visiting him in25 years with little effect from it, so I didn't really take in how serious it could be. Reading up on it I then probably felt like you do now.I didn't know whether to panic about the heart or liver first. All I can say is try not to worry and follow your specialists advice. Unfortunately I am allergic to Urso and this means I can't take statins because they make my liver worse, so thet kind of stresses me sometimes.

I believe in taking whatever I'm advised to as they know more than I do. It's good to read up on this I think but don't just latch on to the worst cases. Hopefully you'll be one of the lucky ones that doesn't go on to get the worst symptoms. There are many that don't it seems. Eat as healthy as you can and exercise, follow specialist advice, and then try to put it out of your head. Good luck x

Thank you very much for your support I will take the advice as try and do as your saying it makes me realise there is always someone worse off thanks xxx

Hi I am 41 with two small children, I was diagnosed in May this year and all I could think about 24/7 was pbc. I was sure I could cure myself and tried cutting out things, changed my diet drastically and visited numerous alternative therapy/medicines. Then I joined this website which was the best thing I did. Reading many peoples' stories helped me "calm" down a bit and realise that I shouldn't be stressing so much and that I need to be enjoying my life. I am no longer stressing with my diet (although I do eat healthily) and have started taking urso, my last blood test result showed that my liver results were the best they have ever been. It is really hard not to worry or think about it when you are first diagnosed but for me I feel better about it having been able to talk to people here x

Kimmy1972
Kimmy1972 in reply to Tg10

Thanks very much for your kind words x

Hidden
Hidden

Hi. I'm 41 and also have 2 young children. Like you, I went into complete panic when I was diagnosed. This site has really helped provide support and comfort that my 'time up' isn't as imminent as I'd convinced myself!

Also join the PBC Foundation as they have informed they can send out and newsletters. They even do a 'PBC for GPs' leaflet which I took to my GPS as he didn't know anything about it.

Try not to worry, follow your consultants advice and I'm sure we will still be here in many years talking about our grandkids! Xx

Kimmy1972
Kimmy1972 in reply to Hidden

Thanks for kind words now I don't feel alone not that I would wish this on anyone I am a university student I am hoping once I start medication this chronic fatigue will go as all I want to do is sleep and I have awful brown marks all over my face I hope they go I feel more positive this morning thanks everyone xxx

Yes is the short answer & I still do at times when I'm feeling really poorly. But joining the PBC foundation & reading the compendium has helped put it all in to perspective. I'd have been lost without them they're always there to ask anything. X take care.

Hidden
Hidden

Hi Kimmy1972

It's really understandable that your initial reaction is fright & worry, but like so many of us on this forum, the more you read about the disease & it's affects you'll see that the majority of people carry on their life's as normal & are more likely to die with the disease, than of it.

You'll will find lots of support on this site, & answers to many of the questions you may have.

Take care of yourself & carry on enjoying life.

X

I think most of us felt like you when first diagnosed. It is a lot to take in. However, the URSO did kick in after a few weeks and I definitely felt better. Also, as already mentioned, you are more likely to die with PBC than from it. This keeps me going and has put evrything in perspective. I find that I need to go a bit easier on myself as my fatigue is much worse if I over do things. Stress for me is a definite trigger and I can feel quite easily overwhelmed. Be kind to yourself and best wishes.

Hi, I was diagnosed 12 years ago, after having my son. I'm 46. It was found quite by accident during some routine blood tests. I was a bit panicked when I first had the diagnosis as I was called back into the Liver Unit the day after my original appointment, however the Professor I saw explained that many people die with PBC rather than because of it and it may never get any worse than it was at that point. I have had annual check ups since and I have just started taking URSO (they put it off while I was still having my family) although I'm not very good at remembering to take it - mainly because I don't feel that I have anything wrong with me!! Try and put it to the back of your mind, if you can, and just enjoy life!

Take the urso because this slows it down. It is a slow progressive condition anyway so it may not ever trouble you much. Try not to stress and pace yourself, if you feel tired try and rest. Eat healthy, limit alcohol, and keep in touch with this group because there is a lot of experience and support here. Any medical questions can be directed to the PBC Foundation who will tell you right. Good luck and a warm welcome to our very exclusive "club". ☺

Hidden
Hidden

Hello Kimmy1972.

I was 45 when I started itching back in early 2010. By Dec 2010 which by that time I was 4 months off my 47th birthday, I was diagnosed with PBC. I started on urso at diagnosis.

I had stumbled across PBC in first a library book and then I looked online many months prior to being informed that I had PBC. I just thought back in 2010 I was exhausting myself in a full-time job where I was working over the allotted hours and that everything had caught up with me.

I think when you are first informed you have PBC and then know it is something that will remain with you for life it can be quite a daunting prospect. I think it can change your life but you need time to accept it all and the more time that passes for me I think I relax more about having PBC.

I know in the early days of PBC the itch was pretty intense (24/7 during 2010, part of 2011) but slowly it started to change and for a few years now it has been seemingly confined to night. That holds its own set of upset as I have broken sleep during the night and then feel tired some days after 3p.m. I was fatigued during 2010 but at some point during 2011 that seemed to vanish and it hasn't returned.

I wasn't sure in the beginning of diagnosis if I'd be here 5yrs down the line but it's almost 5yrs since I was diagnosed. My blood work hasn't returned to normal but it's not overly-bad these days.

I decided long ago now that I'd not take an interest in what PBC could become but would get on with life living it the best way I can. I'll deal with things as and when if it has to be. To me if I don't it is wasted time. There are a few things I know I'll probably not do again (eg going to the cinema and watching a film, doubt I could remain still for the entire film as I often feel prickly when not on the go), but they are not anything that are crucial.

If you've not already, check out Liver North website and request their free dvd on PBC to be sent to you. I got a copy several yrs ago now but didn't watch it all, my husband did though. You can also join PBC Foundation if you haven't already.

livernorth.org.uk/

Thanks very much for your kindness and experience xx

Hi Kimmy,

I was dx 18 months ago and like you just freaked. I'm 55 and was really looking forward to some me time after having 4 children. Last one left for uni and bang! As time goes on you will find your own level with it. Everyone is different with a range from no symptoms at all to many different symptoms. I haven't responded to Urso but next month I will probably start on the new drug as part of a trial. There are always options. Main thing is be kind to yourself, eat well and generally take care of yourself.

Before you know it you will be on this site answering others who have just had a dx and offering them the benefit of your experience at this time.

There's lots of good advice in your replys. Look forward to hearing how you're getting on.

Xxx

Thank you everyone has been so kind and positive xx

Hi kimmy 1972

I was diagnosed with the pbc 2002

I didn't feel scared because I had friends diagnosed

With Vancer ,I went to the nursing college as I had no

computer, and looked everything up.

Then contacted to pbc foundation . I love

The Bear facts get lots of information.good luck

Keep well xx💕💕

Hi Kimmy1972, I find myself in the same position as emerich, i too had a heart attack and then was diagnosed with PBC - I found it scary too and still do , I have only just joined this forum and already it has answered some of my questions and calmed me a little .

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