PBC

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I have just been diagnosed with PBC after a liver biopsy im really worried about it. Ive been prescribed URSO has anybody any advice or reassurance please/

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  • Posted

    I have PBC and in July it will be two years living with it. Just had labs done and it is not progressing for me. I follow a plant based diet and take my medication. My biggest issues at this point are dry mouth and dry eyes and some days I am very exhausted. I try to keep good sleep habits by going to bed and getting up at the same time daily. I try to watch fats, sodium, and sugar in my diet. I am also am connected to a Faith based community which gives me hope to survive what challenges come my way in dealing with PBC. My biggest concern is I need to add regular exercise, especially strength training. I figure since muscle burns fat that may help me a lot. I don't know if any of this helps you. When I was diagnosed my Dad had just died from Cancer and I spent a lot of time crying out to God saying, why me God? I decided it was better to pray to be a strong person and not for an easy life. A positive attitude and a joyful heart are the best medicine! Sending you well wishes! Take care of yourself. Jo

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  • Posted

    Hi Christine, I have been PBC for 5 years, confirmed by a puncture of the liver. I also take Ursochol (I live in Belgium) 4 / day. Due to the disease, I no longer take vitamins and nutrients and need to take extra. I always have anemia and you must also have this checked! I do not know how it is with you but I am still extremely tired! I eat things that the liver can handle well and hope that it remains stable!

    Have a nice day !

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  • Posted

    Hi Christine. I’m sorry you’ve just been given this diagnosis. I was diagnosed about 5 years ago after a routine blood test revealed  raised liver enzymes. I had a liver ultrasound which showed I had a slightly fatty liver but possibly not unusual for my age. I was prescribed ursodeoxycholic acid and have been taking them ever since. I’ve had no side effects and my condition has not progressed, in fact my liver enzymes have improved vastly to a normal level. I have also taken milk thistle tablets since my diagnosis. I am fortunate to be asymptomatic, apart from tiredness (but I’m not a good sleeper so may be unrelated to the PBC). I was very frightened at my diagnosis but I was lucky that the condition was picked up early and the medication has obviously worked for me. I get plenty of rest, regular exercise  (walking with my two dogs) and eat a healthy diet. I do hope my story will reassure you and the medication improves your condition. 

    Very best wishes to you

    Bronwyn 

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    • Posted

      Thanks thats a bit of reassurance. I also have a slight fatty liver but im 67 so expect that. Consultant said l have slight scarring of my liver. Apparently my enzymes have been slightly raised since 2016 l have sjorgens and lupus so have regular bloods done. I have been itchy but thought it was ezma but now it makes sense. Im not sleeping too well and assume thats part of it.
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  • Posted

    I get itchy also and I don't sleep well either. I sometimes take melatonin for sleep and that helps some. I am in menopause and have hot flashes. My Specialist said there is a medication for the itchy skin. Not sure of the name of it. Hope you find some relief. God Bless, Jo

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    • Posted

      Thanks Jo I will try and persevere with the itching as long as I can as I don't want to take any more med the least the better im already taking plaq for my lupus and HRT even though im 67 I carried on taking it to protect my bones as I was on long term steroids for my sjogrens and lupus. My consultant said my liver has a few scars but mild but that scares me 

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  • Posted

    Yes, I don't blame you about taking more medication.

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  • Posted

    Hi Christine,it is unfortunate to go through that.I thought to share about my dad who was having fatty liver in 2016 and his ALT counts were too high than the normal range and the doctors told him that there is no medication for this and he started take this natural plant based supplement ( checked with doctor)for 9 months and now his counts are within limit.Also one of my friend's friend has stage 4 Liver cirrhosis and he also took this supplement and his health is back to normal.I am not here to promote any product but thought it would help someone who hopes to get his/her helath back to normal.

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  • Posted

    I have started antihistimes for itching and it has helped. Im due to see my gastro consultant again in so will ask about milk thistle. My eyes are so dry and sore so im using eye drops prescribed by gp. Im having good and bad days at the moment this cold weather doesnt help.
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