Does the PBC cause the itch or the urso?

Before diagnosis I had no perceivable itch. I've been on urso about a year now. Recent bloods came back normal lft. So I guess urso must be working. I have scabs on my arms from itching. I did start taking questran light but gave up after a few days. Is it worth trying again. My official diagnosis is probable PBC as other results don't quite fit with typical PBC.

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  • Hello Frances61.

    Itching (or pruritis as it is known) is a sympton that can be present in PBC. I started to itch badly early 2010 and December 2010 I was diagnosed with PBC and started taking urso. For a few months after starting taking the urso I thought the itching was a bit worse but over time it reduced in frequency and I now just start to itch around 11p.m. and it has gone around 6a.m. Happens every day, some nights worse than others. I do feel prickly at times during the day, if I bend my elbows for instance, the crook prickles, if I do with my knees also but the itch is with me at night.

    The itch is said to be due to used bile in our system. We need bile for digestion of food, fats in particular. The used bile is toxic and due to a compromised biliary system with PBC some of us don't apparently deal with it normally and the used bile in the bloodstream (hence itching any place on the body) then leeches to the surface of the skin. My theory is then it reacts with all the tiny nerve endings and this is what causes the awful itch sensation. in a way it is a protection getting rid of the used bile but at the same time for the ones who do itch a very irritating and for some distressing time.

    I've not taken any form of medication as yet for the itching as mine has altered.

    I believe with the Questran you have to take it for much longer if it is going to work for you but it also has to be remembered that it's not a sure thing as it doesn't work for a lot too. If the Questran was a guaranteed certainty for the itch I'd have long since got it.

  • Hi Frances61

    The so called itch of PBC is a known symptom of PBC. I "itched" for quite a while mid 1990s but was not diagnosed until 2006 when I no longer "itched" however the "itch" returned in 2014 and since that time I have been searching for a solution. I was not under the care of a specialist and the GP struggled to help me. I was eventually referred to a specialist who I saw in January of this year. Summer last year I was prescribed colestyramine by the GP but it did not rid me of the discomfort, I now take Rifampicin in addition to the colestyramine and the URSO. Currently I have tolerable days, decent nights but I still am aware of the irritation. It can take up to 8-12 weeks for the colestyramine to fully work.

    Some people respond well to the questran or questran light it is horrible to take so I take it with orange juice and water. Others do not and need additional medication.

    If you are a member of the PBC Foundation in their members section you can find an article written by Prof. Neuburger on Itching in the Spring 2015 edition. If you are not a member, it is free to join and can be accessed through the link above.

    You can also use a 2% menthol cream on to unbroken skin. This seems to temporarily confuse the skin and the relief is quite pleasant. It is however only temporary.

    amazon.co.uk/Dermacool-Ment...

    or

    amazon.co.uk/Arjun-Menthol-...

    I have used both with reasonable results.

    I know how difficult it is to not scratch but if you can find alternatives it will help. I use an old rough flannel and I also have used ice blocks directly on my skin I do cause bruises but where I use the cream I think it keeps the skin more supple so I rarely break through. The discomfort that I get on my face is however quite a different matter!

    Hope this is of some help. Not sure where you are from but if you are in the UK the dermacool cream can be prescribed by your GP.

    best wishes

  • definitely the pbcis itch cause as i had terrible itch 6mth before getting ursodeoxycholic. x

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