Does suddenly having itchy hands and feet mean my pbc is getting worse?

I had pbc diagnosed 8 years ago after my last pregnancy. I fortunately have not had any of the dreaded symptoms associated with pbc but have just recently started having very itchy hands and feet. My bilirubin 2 months ago was normal my alkaline phosphate is around 400 which it has always been. Does anyone know what this sudden itching means or is my pbc worsening?

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  • Hello Gilz1702.

    I am an itcher, started in early 2010 and by Dec 2010 I was informed I had PBC. I was 46 at the time.

    I've never really stopped itching since starting urso Dec 2010 which is not what you would like to hear. My bloods have improved though and I feel quite fine 3yrs on.

    My bilirubin has always been normal. Can't say offhand what my ALP or ALT or GGT were but they are abnormal but considered normal for someone with PBC.

    Basically itching in PBC (and I expect other liver conditions) is due to our system not being able to handle what is thought to be bile salts. My theory is that later in the day after we've been eating during the day, used bile then has to work its way back up the bloodstream to the liver where it is either recycled by the liver or processed as waste. The itching I believe is due to the salts acting on the tiny nerve endings, that is why we feel it at random over the body. It has been said that the bile salts seeps out thru the skin pores as a way of expelling them thus keeping our system better intact as bile is the most toxic thing we produce.

    Itching does and does not occur with PBC regardless of how we are with it. Some PBC patients never itch, others do. It apparently has no bearing on how we are with the PBC.

    I've tried allsorts to try and lessen the itch over the last few years but to no avail. Some days I might hardly itch, others I might itch and I cannot figure out why.

    Have you checked your recent blood results and if they are not very different from your previous ones when you didn't itch I'd say that you are doing fine at present.

  • The pbc foundation info says that studies show the other symptoms have no correlation to your liver function results. In otherwords people who's liver function is almost normal can had extremely bad itching yet somehow someone who's readings are extremely high might not have any.chances are either the itching has just started and is a symptom or is non related. I doubt it means your liver is getting worse. I only get occasional itching and always my legs. Maybe someone who gets it in their hands and feet can advise on that.

  • Hello janey_babs.

    I tend to itch on my legs and also feet/toes later at night. I'm quite ok during the day, start feeling the odd prickle early evening if I am sat down.

    I think that once we start with the itch in PBC unfortunately we are stuck with it though there can be variations of the itch, some days moderate, others a bit more severe.

    I have discovered that just before and during my monthly cycle (I am not yet 50 but perimenopausal) I tend to find I itch significantly more and then it tapers off.

    Perhaps there is a chance if our LFTs return to normal and remain like that for some time it may be possible for the itch to subside somewhat but I cannot answer that as I've not got normal LFTs.

  • Hi Gilz..I just posted a question tonight about peeling skin on my feet and hands, especially my palms and middle fingers. I started on Urso about 2 mths ago. My hands are so dry and itchy, and the skin keeps peeling off. Hoping this is the only symptom I have.

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