PBC Foundation
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Can anyone tell me about the itching, I'm new to all this and didn't really have much itching but today it can only be described as having little ants crawling up and down my legs, my legs are very swollen the last few days along with my ankles and still very red and blotchy, I see the locom Doctor who wasn't very helpful at all and told me to wait till July until I see the specialist again.

13 Replies

I have been prescribed antihistamines, the chemist said citirazine was better with liver problems, I had been taking loratadine for my hay fever for years but now I'm on citirazine, dr said I could take two if needed. The liver specialist said that the questran light was good for the itching. I was also prescribed dermacool cream, which is cooling to the skin.

My advice would be to get onto the Pbc foundation and they have a guide on all things Pbc.

Good luck


Hello Yvonnejulie.

Sorry you are experiencing this damn itch of PBC. Me too. I started to itch early 2010 and it was almost 24 hours a day. i was never offered more than Piriton which is an antihistamine, in the beginning of seeing my GP (I am in the UK). Of course that didn't do anything as PBC isn't an allergy. The Piriton I took for 2 days only as it made me feel very nauseous, something that I hadn't been prior to taking.

I was itching continuously up to diagnosis and wasn't offered anything at all. I plodded on as awful as that sounds. After starting urso for the first few months I did get a few side-effects and thought the itch was worse. But I persevered after receiving my first blood results 2 months into urso and the itch over time for me has altered. I tend to now only itch late at night until around 6a.m. these days. I liken the itch to having wasps stinging or rolling around in nettles! I know it can occur on any part of the body. I feel prickly during the day if I do certain things like bending at the knees for eg. Reckon due to blocking blood flow as itch is thought to be used bile in the bloodstream that then has to escape via the skin pores. My theory is that this used bile then reacts with all the tiny nerve endings giving us the itch sensation.

I think if you are new to urso it might be this but if so it more than likely will settle.

You GP could actually ring a consultant at the hospital for advice. Questran seems to be the first line of defence that is taken for the itch of PBC. I've not gone down any route as yet but who knows in future. I have been reluctant as it seems that with the first med used, the Questran (or colestryamine as it is known generically apparently) seems very hit and miss with the itch. it is supposed to be very nasty to take too. If you've not already, check out the free dvd all about PBC that Liver North (www.livernorth.org) can send you if you fill out your details on the website. Meds for the itch are detailed there with a consultant.

I have tried various ways of relieving the itch. Find some are temporary and can help. I have bathed in Epsom Salts as it is supposed to be good for ridding the body of toxins but also good for muscle and joint pain (not that I have the latter). I have used Dead Sea Salt for bathing and also Sea Salt you can buy for bathing. I've even tried vinegar (cider) in the bath. I know a couple winters ago when I did have a bit of shoulder ache, using white Tiger Balm on it at night with having menthol in it it sort of distracted from the itch so I was able to go to sleep. Keeping as cool as possible also helps. At the moment now the temperatures are soaring in the UK I am finding being hot and sticky in the daytime mean that I am finding myself prickling a lot more with this PBC.


Thank you for that, I will give some of them ideas a try.


I would talk to the advisors at the PBC foundation (link to their site at the top of this page, then access to phone and email details to talk to their trained advisors - they are great.

I would also make another appointment with the best Doctor in the practice. I don't know much, but I don't think the swollen legs and ankles should be ignored.

But do talk to the 'PBC Foundation' people: they will know, they are the experts.

Take care

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Colestyramine, I have the orange sugar free one mix it up and then pour it over ice, I think I am the only person on earth that like the taste.


The assumptopn is that the two tjings are related amd that they are both caused by the liver prpblems...this is not necessarily the case there are lots of other causes for itching or swelling e.g

Cellulitus or kidney issues can cause fluid probs im not saying it is either of these but if yoir under liver consult then ring their secretary and say your having new probs they will try amd see you.

If not do see another doc at practice it should not b just assumed its liver itch without checking.

I had blotchy palms with liver prob but not no blotches on body.

My son is coeliac and b 4 we knew properly we took him to out of hours surgery as he had a pain which had moved from one side to other was being sick bit of a temp..i was convinced he had appendicitus..we got sent home he said see yoir consult ...probably the gluten!!!!the next morning he was taken to our docs who sent straight to ward and he had surgery for an inflamed appendix which could have burst if left.

My point althoigh ive waffled on is that docs get fixated on a condition and try and fit everything to that so if we get put in a box we have b strong and make sure its not something else unrelated.best wishes cazer.


P.s mine feels bit like midgy bites or a prickly feeling.cazer


Hallo Yvonnejulie. I have had the itch for years and have used whatever I could lay my hands on. Even lately bath with 100% olive soap imported from Turkey (awful smell) but it helps to strengthen the skin a bit, because I scratch till I bleed. I just know I have to accept this is never going to go away, as it is part of PBC. Let me know if you found something, because my place already looks like a chemist.


Ooh no, you seem to have it extremely bad, thank you and if I find something I will let you know ;-)

1 like

Hi there I'm lucky not to have too much PBC itching but when I first started urso I had a reaction like the one you described. Are you new to taking it? On the advise of my consultant I halved the dose I was taking, the itching went away over a few days, and I slowly worked back up to full dose and am fine now. Perhaps try that?


Hi Suziebeau. I have been on Ursotan since 2009. The itching is not from the medication,it is from all the toxic


it can get bad for me - I had a violent itch reaction to a sunburn after the march break but until now (that I have my diagnosis) the itch didn't make sense. The regular PBC itching definitely has worse moments ... I've been taking reaction at one point, and now I'm taking benedryl


Hello Yvonnejulie,

If you haven't registered with The PBC Foundation already, it is completely free to do so. Once registered there is a wealth of information on our website in The Member's Section on our website. Our compendium called "Living with PBC" can be found there which has been written in conjunction with our medical experts and it covers the itch among other topics.

Alternatively we have our Helpline service where you can chat to one of our team in the strictest of confidence.

Here are some useful contact details for you:

Website: pbcfoundation.org.uk

Email: info@pbcfoundation.org.uk

Office: 0131 556 6811

Best wishes

The PBC Foundation


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