I am new here

Hi:

I was just diagnosed with PBC last Friday, (April 21st) . I am 61 years old and too scared. First, scared of what will be my future health condition and second how many years left I have. I live in Spain, specifically in Las Palmas (Canary Islands).

The doctors will called me for a Fibroscan so I do not know yet in which stage am I.

The only thing I have is like a muscular strain in my abdomen right side.

Please anyone who can tell me something

9 Replies

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  • Hello

    Most on here know how you feel.

    First of all, most people die with PBC not from it. It is, for the vast majority, a slowly progressing disease.

    Secondly- Do not Google it. I did and gave my self a fright. There is a lot of old and inaccurate information on the internet.

    Thirdly- Join the PBC Foundation. It is free and the infomation on there is up to date, accurate and understandable. There is also a phone number if you want to talk to someone.

    It will take a little time, but as you learn more you will be able to calm down. It is horrible when you are first diagnosed. There are lovely people on this forum who have had PBC for many years and are still living a good life. They will help and encourage you i am sure.

    Best wishes

  • Lindy;

    Thank you very much for your kinds words. I have joined the PBC Foundation already. I will follow your advises, and I am still reading many answers in the blog.

    Thanks again,

    Rita

  • Hi, the future is not as bleak as you think. Of course there will be a few changes but you can carry on as you are. Keeping stress down is a big help, take things as they happen don't look for problems, PBC affects folk in different ways. I am sure you will get through it..,. 😀

  • Thank you for your encourage, I will do my best.

  • Hi and welcome ritarobainapbc!

    I'm fairly new to being diagnosed with PBC too, although I believe I must have had it for at least 4 years prior to the liver biopsy that led to PBC diagnosis. I was diagnosed just over a month ago and I can tell you I was scared too. I made the same "mistake" (but unfortunately almost unavoidable because of how the medical system works) of looking up information using Google and similar. But later I was given a leaflet made by the fantastic UK's PBC Foundation and from there I went to their website and became a member, received a lovely welcome letter and lots of very helpful - and calming and reassuring! - information plus I found my way here to this amazing forum that feels very much like a very understanding and extremely helpful extended family! ❤️

    You are not alone in this! You've made your first right step towards finding your way of coming to terms with your new diagnosis by coming here and visiting PBC Foundation, it's not going to feel so raw and hopeless anymore and you will find so many answers here - probably even to questions you haven't even thought to ask yet! 🙂

    Please don't despair, there's much that's being done in terms of research even for PBC specifically! Medicinal research and trials, alternative treatments research....

    There are also at least two other helpful groups on Facebook if you're using it - "PBC Awareness" and "PBCers Organization" @PBCersOrg, who just only recently posted about their own promising research, quotation of extracts:

    "Why Did I Get PBC?

    By M. Eric Gershwin, MD

    University of California at Davis

    Revised April 22, 2017

    "..... Most importantly, we started investigating several mice models of PBC and results are promising. We now even have a mouse in which only female mice get PBC; the males are OK!! This has helped us identify immune pathways that theoretically can be blocked to help patient and I am so pleased to tell you that MANY PBC trials in patients are underway now all over the world to test new drugs and all based on our work with PBC mice..."

    "..... Conversely, the protein released by bile duct cells can be captured by specific immune cells called macrophages which could in turn initiate the inflammatory cascade that characterizes the PBC liver. This has also led to some new drug testing and especially drugs that may prevent inflammatory cells from finding the liver and therefore reducing the inflammation.

    My lab has been on the trail of a cure for PBC since 1985 and we will not stop until it is completed. ...."

    Now, how does that sound? 🙂

    Did they give you Ursodeoxycholic acid yet? As I understood it, only a few years ago this could be still difficult to come by sometimes, pharmacies didn't stock it etc., also the secondary treatment Ocaliva (obeticholic acid) has only recently been approved - so, us newly diagnosed are lucky all this already exists and is available to us straight away, alongside the online support like here! All these little-big details have helped me so much personally, I hope you will find much reassurance here too!

    Good luck with your fibroscan, let us know how it went!

    Big hug from Scotland!

    Klara ❤️☀️

  • Klara:

    Thank you for your extensive answer. Certainly, I am taking Ursodeoxycholic acid twice a day, 300 mg each time. Hope it will help.

    I am glad that lab investigations are working on it.

    I will post my fibroscan results as soon as I have them. I appreciate all your interest. It is really a big family

  • Hi ritarobainapbc

    Welcome to this merry band but sorry you have to be here. As you have already found we are a great bunch on this forum and to add my pennyworth I was diagnosed in 2006 probably had it for at least 10 years prior and am now 66 and feel pretty well apart from being an "itcher". Don't worry too much about what stage you are. It seems that staging is used in America rather than in the UK and everyone is different so really the staging is not a huge criteria. As others have mentioned stress is not good for us so it is best if you can to avoid situations that are stressful.

    best wishes

  • Hi butterflyEi

    It is a relief that you have been already so many years with the illness and your still there with a pretty well life except for the itching. I congratule you and I hope my case will be similar to yours. All your experiences give me support than I am not alone in this road..

    Best wishes for you also

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