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Hi my name is shell, I'm feeling quite confused at moment, my gp referred me to hosp because my liver enzymes were high, had lots of blood test and scan, was told I had gallstones and an auto immune disease but never told what, had my hosp app and he mentioned pbc but didn't explain himself to me, sent me for biopsy, waited 3 months for results of which I received a letter saying I had early stages of pbc, need regular appointments, no mention of any medication and I'm waiting for an appointment to come through, I have read lots of things, some of which scare me, I told the doctor I have stopped drinking and he said good, does that mean I can't drink alcohol ever, what tablets can I take safely as I suffer with a disc problem, any advice greatly appreciated, thank you

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  • Hi mnoye,

    Welcome to pbc.org. Don't get freaked out or stress lots of people here are like you suffering from pbc.

    Pbc is an autoimmune disease so nothing to do with food and drinks.. it has its own slow course of destroying bile duct which leads liver into fibrosis or cirrhosis.

    Liver main functions in our body are filtering blood, detoxing chemical and metabolizing drugs which are effected or weaker on pbc patients so that's why we need to be very careful what we eating and drinking..

    I have first stage pbc as well but I drink beer and wine but not more then 4 serving in a week.

    I may have a scary disease but it won't deter enjoying my life..

  • Thank you, I will stop worrying.

  • Hi Shell

    Welcome to this very supportive group.

    First of all it is advisable not to Google PBC. There is a lot of old and incorrect information on Google. More useful information can be found on the PBC Foundation website. Membership is free. pbcfoundation.org.uk

    There is a compendium you can download. It is good to refer back to.

    For the vast majority of people PBC is a slowly progressing disease. Most people die with it rather than of it.

    Diet does not cause pbc. Neither does alcohol. But we can not do any harm by cleaning up our diet and giving our livers less work to do.

    I'm sure when you get your appointment things will become clearer. Medication to slow things down will be discussed then.

    There are lots of men and women in this group who have had PBC for decades and still lead relatively normal lives. I'm sure you will hear from them in time.

    If you have questions please ask. Someone on here will be able to help.

    Stay calm and try not to worry

    Best wishes

    Lindy

  • Thank you, that will teach me for believing everything I read on the internet.

  • Hi Mnoye. I have had PBC for over ten years and have been at stage 4 for two years. Don't believe everything you read on the internet. Most of my debilitating problems are from other health problems. People have lived with stage 4 for over twenty years and more. Join the foundation and they and us will help you through it. Big plus if you don't know God as you're personal savior, now is a good time to do that. Him and faith will keep you going in the right direction. God bless and nice to meet you

  • Hi Mnoye

    Welcome to this group, you will find a great bunch of people with personal experience who are happy to share. As LindyRich has said the PBC Foundation is a good source of information with easy to follow video. LiverNorth is another good source of information as is PBCers.Org which is an American based organisation. There is also the Canadian PBC Society.

    As to the question of alcohol - it does NOT cause pbc but it is something that causes the liver to work harder so many doctors recommend cutting it out completely. For myself I choose to have a glass of wine on special days.

    The recommended wisdom on tablets for pain is usually just paracetamol. Has your disc problem been diagnosed and prescription medicine been prescribed? Sometimes we have to weigh up the benefits of medication for one problem against the disbenefit of PBC.

    For myself I was diagnosed in 2006 although pretty certain symptoms had presented at least 10 years prior. I was prescribed Ursodeoxycholic acid and have been taking URSO ever since. It will be prescribed at a dose relative to your weight.

    hope some of this helps, keep in touch and let us know how you get on.

    best wishes

  • Thank you, I have been on naproxen, diclofenic, cocodomol, diazepam for my back, not all at the same time, but now just taking diclofenic when it's really bad.

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