Relaxed doctor

Hi, everyone. Looking for some guidance. I have been seeing the specialist for about 3 years due to water retention, fatigue, high liver enzymes. He put me on meds and the water retention is under control. Liver enzymes are always elevated and liver is enlarged. I always go for blood work about every 4-6 months. I went for my appointment the other week and he said I tested positive for PBC. Now this is where my concern comes in. He is very relaxed with doing anything. In his words he said "maybe when I am about 75 I might have to start to worry about a transplant" I have some pain in my liver, fatigue, sometimes my body just hurts all over. Its almost seems like flu like symptoms. I am going for blood work every month until I see him again in Nov. Any input would be greatly appreciated. I'm 45 much too young to feel this darn old

7 Replies

  • That's normal, don't worry. I am stage 4 with cirrhosis and my hepatologist says a similar thing. Most with PBC never need a transplant and if you do it could be years ahead.

  • Hi met4wilk,

    We all feel a bit like that - particularly when first diagnosed. Are you on URSO yet? It does make life much easier to enjoy. At first it is all over scary but once the medication starts working you will start feeling better and the damage to your liver will slow right down.

    Take care.

  • Do join and get in touch with the PBC Foundation, Your Dr is right, in that PBC can be slow but its worth asking for a referral to specialist if only to check if you should be on URSO which slows the process apparently.

  • Hello Mek4wlk

    I was diagnosed with PBC approximately 10 years ago and was given ursodeoxycholic acid (hope I have got the spelling correct) in the guise of Ursofalk. I understand that the outcome for those being given Urso early in their diagnosis is good. I am now 64 and bumbling along reasonably well apart from the dreaded itch.

    The Foundation has a couple of good videos and although obviously recorded some time ago the information still stands good. There is also a wealth of information in back copies of the Bear Facts magazine. Information can be accessed from the members section and the Foundation is free to join. Here is the link.

    Urso seems to help our little bile ducts, once it gets into your system it will help and hopefully you will start to feel more like your usual self. I am fortunate to only have the brick wall of fatigue from time to time however it does seem to be one of the main symptoms in PBC.

    Other sources of information are:-

    PBCers Org. to be found on Facebook

    LiverNorth -

    This is a wonderful group and I am sure you will have more answers coming along soon.

    best wishes

  • I would talk to the PBC Foundation (link to their website at the top of this page). There will be phone numbers and email details, to talk to their advisors. If you join you will get a comprehensive fact-file on PBC, that is much more up-to-date than the ancient and often overly-scary stuff on the web.

    Try to have copies of all test results and letters to hand, when you talk to them - If you have not got them, ask at your GP reception (I always, now, get a copy, immediately from my GP when I see him). It's your right to have a copy, but there may be a copying charge, and more if they have to search out older stuff.

    You don't actually mention if you have been told you have tested positive for AMAs (antimitochondrial antibodies). This is one of the 3 main diagnostic criteria for PBC, along with elevated liver function tests for a period of over 6 months, as well as a liver biopsy. Strictly speaking you need two out of three of the criteria, although it does sound as if you have the main symptoms of fatigue and itching.

    However, the specialist should also have ruled out all other liver conditions that may cause these symptoms, as well as other autoimmune conditions (some of which also feature sub-types of AMA) which can often occur alongside PBC, or which have similar symptoms to PBC. You may also need checking for vits and minerals, and osteoporosis, as PBC can cause a lack of fat soluble vitamins, which can then affect calcium.

    I would talk to the PBC Foundation people, as they will guide and reassure, and tell you what else needs to be done, eg if it is a definite positive for PBC, I would expect you to be put on Urso, and a liver scan to be done.

    Above all, don't worry. Act and take charge, but other wise, spoil yourself, have treats, live life to the full. As the others have said, PBC is no longer the problem it once was for most people, and as with any autoimmune condition, the best approach is to avoid stress and have fun.

    Take care.

  • Hello mek4wlk,

    I have sent you a private message.

    Best wishes

    PBC Foundation

  • Hi Mek4wlk,

    It sounds like you've been waiting for some answers on your condition for awhile now. I guess I'm a bit bewildered as to why, if your enzymes were elevated for 3 yrs and with all your symptoms that it took this long to receive a Dx. I'm assuming he did an AMA test and I wonder if he had done one previously. Have you ever had a liver biopsy? The symptoms do sound pretty typical for PBC. Hopefully, you'll be started on Urso soon and maybe that will help alleviate some of your symptoms. Wishing you good health!

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