I have recently been diagnosed with an autoimmune disease called Primary Biliary Cirrhosis . So far I have found lovingly supportive people in my life, with me dealing with this disease. Not that much is known about this disease, I still have many questions. Does any body know how long after diagnosis do you have before a transplant is needed? I am on URSOForte 500. I also take cholestrymine for itching. My doctor said the no stages and she said it was caught early but I still have other questions . Does anyone know of a good site to go to on the internet?anyone have this disease?

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  • I am so sorry to hear you have been diagnosed with primary biliary cirrhosis but you have answered something for us. My husband's mother died nearly 40 years ago and this was put on her death certificate. No one at the time knew what it was or what caused it and she was used as a type of guinea pig, putting her on low salt and no salt diets and other types of things. The fact that it is an autoimmune disease didn't seem to cross anyone's mind at the time. I am sure that now there are so many more things that can be done for you and I hope you have a good and healthy New Year. Keep positive.

  • Hi Krazy-girl,

    Recommend you post again on a different Health Unlocked community: PBC Foundation. You'll find a great friendly community and probably more responses to your questions than you could wish for!

    Also when you look at the home page for that community, at the top of the page you'll find a link through to the PBC Foundation itself. I highly recommend you e mail them or phone and join (it's free) as you will then have access to their considerable resources and helpful knowledgeable support including a manual called 'The Compendium' and a regular 'Bear Facts' magazine. They will be able to answer all your questions.

    Try not to research too much on the internet as there's a lot of very inaccurate and out of date info on it, that can worry you if you let it. The last thing you need is any unnecessary stress or worry. PBC can be a very, very slow moving disease and if it's been diagnosed early, that's great reassuring news. Many live with the early stages of PBC for years and years before it has any significant impact on their lives at all.

    I have the antibodies (AMA M2) which indicate that it is highly likely that PBC will develop in me at some point in the future but up to now my liver function tests (LFT's) are normal and I am symptom free. This means that I cannot be diagnosed as having PBC for now. However having Raynauds is a daily pain in the backside!

  • Thanks Bidpiglet, for your information. I will look into the pbc foundation for more answers. I have had a terrible day. The "itching" symptom hasn't been an issue till today. I have been itching and scratching all day. I tried taking a shower them smothered gold bond powder on to see if that would help. To no avail. I am emailing the doctor tomorrow. Thanks again!

  • No problem krazy-girl; glad to help.

    The other thing that's useful is the search facility at the top of the page.

    Might be an idea to contact or join the PBC Foundation before you e mail your doctor - just so you've got some extra background knowledge to help with the list of questions!

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