Primary Biliary Cirrhosis

Posted , 8 users are following.

Hi

I was diagnosed with PBC September 2007. My bones hurt and my joints ache I also feel exhausted. I pace myself during the day but do feel as if someone is inside me beating me up. I felt alone with this and could not explain even to my doctor how I really feel.

I stumbled across this site today and feel such a sense of relief to be able to talk to someone who understands the feelings.

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13 Replies

  • Posted

    This is exactly how it affects me, I was just starting to recover from Coeliacs Disease when I started going downhill and eventually a few years ago I was diagnosed with PBC due to the presence of Antimitochondrial antibodies and Antinuclear antibodies, my Liver function Tests all come back perfect but it appears that the Fatigue level is directly proportionate to the Antimitochondrial antibody level.

    I hope you are managing to come to terms with this awful illness and I hope that you have got some understanding support without which you begin to feel you're going out of your mind.

    Best wishes to you, Take care, Paul.

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  • Posted

    HI there

    My Rhuemo thinks that I have PBC due to my mitochondrial antibodies M2 raised at 160? I have other abnormalities in the blood too, GGT raised at 118, lGM 2.66, ESR 34. They said my liver was enlarged also????

    I am going to see the Liver Specialist beginning of December. I was just wondering what am I to expect by all this if it is confirmed I have PBC?

    I know what you mean that you feel like you have been beaten up, never thought of it like that before a perfect way to describe the pain I have, and even more so now the weather has got worse???

    Anyway thanks so much for listening and I hope you are having a better day than me?

    Kind Regards

    SES x

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  • Posted

    I have PBC it was diagnosed the 1st of December.... and I feel quite scared. going to get my medication today. Hope it works? as I have three children.

    Anyway thanks for listening

    Regards

    SES x

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    • Posted

      The URSO the doc put me on has levelled my LFT's etc but as I have other medical problems HSP, Arhtritis, dystonia, pain relief is hard to be proscribed due to PBC.....even paracetamol max of 4 is allowed rather than 8 of a healthy person..... I do suffer a lot with bile and acid reflux which effects my breathing still, I have to continue with meds for this too.  Hope you are doing ok Kim57668..... pain day in day out gets me down along with fatigue and pain from head to toe, I could go on and on but not really appropriate for PBC as its all to do with my other medical problems x.
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  • Posted

    Hi

    I am taking acid tabs and they are working I do feel better not great but improving, good luck

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  • Posted

    Hello everyone with PBC

    6 years ago I was diagnosed with PBC and ended having a liver transplant 3 years ago. Following transplant I was in hospital for 8 days and discharged home and I must say that I have made a very good recovery. Its been such a challenging journey for me and I do thank the Almighty every day for my new lease of life and pray that it does not re occur. I am able to empathise with you all so I thought of sharing my expreriences with you lot so that you do not feel you are alone when family and friends do not have an idea of what you are going through. There were times when I used to even feel tired to eat! Here are a few tips that may be of help to you. 1) make sure you are referred to a dietician as weight keeps on going down. Ask dietician if you can have whey protein. Consider deep breathing exercises, yoga Tai Chi , long walks and swimming. Your diet is really important ie lots of vegetabe juices, enriched smoothies, I still make mine with kefir or youghurt and add when protein, fruit, sesame seed, coconut oil about 1 tablespoon, turmeric powder and cinamon and whik it together . it will boost your energy. tasnim

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  • Posted

    Hello again, there was no space on the last slot for me to carry on.

    With PBC you are likely to have achy bones and joints, ask your GP for a bone scan and Vit D levels. Whilst waiting for results do ensure that your diet is rich in calcium, omega3( Cod liver oil), VitD and a good multivitamin . Horseradish is very good. Look in the net for benifits of horseradish.

    Instead of anti histamines i used to apply castor oild to my palms and feet, add a few drops of your favourite essential oil to disguise the smell. read side effects of anti histamines.

    Please do not loose hope and dont be afraid if you need a liver transplant. take very good care of yourselves and let go all your stresses. love and peace to you all and hope you soon feel well, Tasnim

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  • Posted

    Hi,

    I was diagnosed with PCB Liver Failure and Auto Immune Hepatitis of the Liver about a year and a half ago. My family and friends have been so supportive, but not a real understanding of what my body is feeling. I feel so relieved to be able to talk and share with someone who knows what it feels like. I sometimes want to scream or cry with madness...wishing for just one day they could walk in my shoes and feel the pain and fatigue, selfish I know. Well thanks for listening....

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  • Posted

    hi Guest, how are feeling now?
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  • Posted

    hi, I've recently been diognosed with PBC.  How is everyone dealing with the symptoms?
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  • Posted

    Hi ive been on ursofalk for over 2 years and have been managing okay with them, its defo helps the fatigue i take 1 or 2 per day all according how busy i am, i work fulltime in a busy job.

    I also have a gallstone and polyp in my stomach, ive had camera down and biopsy to confirm, I take ameprozole for all that. I manage okay on these too. Dont be scared you'll be okay keep positive the medication will help.

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  • Posted

    Hello everyone

    Has anyone had a liver transplant  since your last post.  5 years has passed since I have had mine and would like to share positive and negative experiences.

    Tasnim

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