PBC Foundation
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New but not to pbc had it since 1979 on no medication have blood test every 6 months or 12 months then just get told either up or down fine come back. All I no have got of the internet I now I am over weight don’t drink a lot but have been told nothing from my doctor. I get very tired and very itchy just started with a pain on the right in my back and under arn just above the ribs I care full time my mum of 92 look after my family I am 61 some days all I want to do is stay in bed. In a lot of pain in my bones. Just don’t think my doctors are interested.


7 Replies

Why aren't you on medication if you have been diagnosed with pbc? Maybe you need new doctors who know about pbc and can manage your condition as needed. With pbc, in addition to blood work, we need DEXA scans for bone density, sonograms to check images of liver and in some cases fibroscans to check liver elasticity. Your doctor caring for the pbc should be the go to person to give you info on the condition and how your status is in this context. Also, you need to coordinate with your doctor regarding what meds and supplements you can take for the optimal care of your liver.

All the best to you.

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Hi there

Don't know what country you are in but there are certain guidelines for treatment of pbc which your doctor should be following. Yearly us scan, endoscopy every 3 years plus dexa scans at 5 years. If you google treatment quidelines in pbc you will be able to read and gain some information. I hope this helps

Best wishes

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Seems amazing that your doctor hasn’t given you Urso. I would change your doctor if I was you.


Hi Ruthyloo

As kimphoebe has asked it would help us to know in which country you live.

For most of us the immediate course of action after diagnosis is to be prescribed Ursodeoycholic acid. A consultation with a specialist may put you in a better position. I fully understand the difficulties of looking after an elderly relative having cared for my mother full time in the last three years of her life, it takes a toll on the body - can you get any help from anywhere?

For the itching while you are waiting for some medical help try ice or some cream with a high content menthol in it. Drink plenty of water to keep hydrated, it is essential. I am an itcher and had to be medicated to have some quality of life.

As to the pain in your back it could be coming from the liver area, not actually from the liver, sometimes a warm hot water bottle may soothe the area but does not rid you of the discomfort.

If you have some time take a look at the compendium on the PBC Foundation website (free to join) it is in the member's section, some of the suggestions may be helpful to you.

In the meantime, again for most of us, we benefit from a diet rich in vegetables, low in salt and sugar. Again there is a mention of diet in the Compendium and the British Liver Foundation also has some suggestions, hopefully this link will help, scroll to the near bottom of the page.


do get back to us and let us know how you get on.

best wishes

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All the others, above, are right, if you have 'absolutely' been diagnosed with PBC, you should be on medication. Do you know exactly what grounds they gave for saying you have PBC, what did they say about tests and so on, back in 1979?? I would talk to the 'PBC Foundation' people who host this website on 'Health Unlocked' there is a link to their site at the top.

You can look at the website, or contact their advisors by phone or email. If you join - it's free - you would also get wider access, and their magazine - plus you could copy their summary of the diagnostic procedure that any UK Dr is supposed to follow for a firm diagnosis of PBC. Also check out the British Liver trust, as suggested, above.

Can you see another Dr in the practise, or even take yourself to a hospital out patients and tell them about your symptoms?

I hope some of this helps.

Take care,


Which country do you live in cant understand why arent on medication


Wow it’s amazing to hearing such a long period survival.

Thank you for sharing your story m❤️❤️


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