PBC Foundation

The Itch

OK so this has probably been asked loads of times before but please humour me. My itch has started getting really bad. It's all over at various times but mainly my arms and face. & randomly under my eyebrows where I can't apply any creams and am going to have none left if I don't stop scratching. Has anyone any tips? & must ask is it a sign that things are perhaps upping their game?

15 Replies

Hello teddybear7.

I really do sympathise along with you as I started with the itch all over in early 2010. It has resolved better since taking urso but I am still left with it. Mine is at night usually. My dread is that in time it might revert back to how it was back in 2010 and it was dreadful.

Not sure if it can help as I have resigned myself to living with the itch now for the rest of my life. (I don't want to take any meds to try to get rid of it at present as for now it is just bearable if not annoying.)

I started having an early morning bath a couple months ago and have one every day. I know some will say that it isn't good but I have been finding that it does make me feel a lot better. I more often than not do not put anything in the water and it isn't overly hot either. I find it is the only time in the day that I can chill out and read some of a book as I dont' tend to do this any other time. I can't help but wonder if having a bath opens the pores and releases what we are supposed to have that causes the itch, used bile salts.

I have used the aqueous cream - a cheap unbranded version of E45 you can pick up in the pound shops in the UK - on my legs in particular following bathing but have somehow found that the cream a bti later on starts to make me feel prickly. Did wonder if it was blocking the pores up?

I try to remain as cool as comfortably can all the time (not that hard in a home that isn't centrally-heated) as I find that does really help to stop feeling the itch.

For me I have a cut off from eating and that is the evening meal for me is the final for the day. I think this somehow helps as it is then a case of digestion will be completed sooner rather than later.

I get up of a morning feeling so normal and then I morph into a different person come early evening when I start feeling prickly. I know that the itch is going to be a difficult one to stop due to the fact it seems to me to work with digestion. I hve started calling myself Morphette early evening!

It's said that the itch in PBC is of no significant gauge as to how one is actually doing with it. I somehow believe this. I also believe that my urso contributes to the itch (I itched a lot more when I originally started on urso Dec 2010 for a few months) but at the same time due to improved LFTs what it resolves itch-wise here, the urso cancels it out.

I try to wear cotton or viscose clothing mainly these days as I find it does help. I find manmade materials like polyester can cause the itch more. I wear a synthetic padded coat now it is winter but if I stop some place where it is warm/hot I tend to feel the prickles on my arms due to getting hot.

Hope I have helped somehow. Be good if a solution could be found for us all.


Thanks Peridot. I do take my urso religiously. & it doesn't really stop me from sleeping once I've dropped off. I just can't stop scratching & do it unconciuosly I work in a public place I think everyone thinks I've got fleas lol. X


Just as a quick thought, there was an article in The Bear Facts magazine (from the PBC Foundation) which discussed the efficacy of taking the Urso dose at night all in one go. I gave it a try and my reflux got worse so back to taking it twice a day but I may work for you. To find the article go to pbcfoundation.org.uk/ and look for back copies, I am pretty sure it was in the last issue.

best wishes


Hello butterflyEi.

I have tried various ways of taking my urso from all at once (morning and even night later 2014) but have found for myself that all at once caused me to start itching at times when I don't normally do or worse in the case of the whole lot in the evening.

I did read in Bear Facts a few years ago now that you can take the whole lot of your urso in the morning. I was curious and over time have experimented with mine but still find for myself that 2 in the morning - I take 4 x 150mgs a day - just as I finish breakfast and then the remaining 2 around half hour after the evening meal seems to suffice the best for me.

When I took the whole lot in the morning following breakfast within a couple hours, I was itching badly and that is something that I never tend to do. I worked up to all the lot in the evening later 2014 and again though I itch at night, I did find that the itch lingered for longer in the morning on rising.

The thing is it is said that urso can only improve your situation with the itch and not necessarily eradicate it. For the odd few it can resolve the itch and it vanishes with urso, for some of us like myself it can improve but I still have it. It has stated that urso doesn't necessary help itching or even fatigue.

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ask the Dr for Cetirizine Hydrochloride tablets


Hello, given that these meds are for allergies, I am not sure if it would help a great deal.

This is what I was informed when I was itching and diagnosed with PBC as the itch in PBC is nothing to do with an allergy or irritation.

My worry about taking an additional medication for the itch is that perhaps it can alter the LFTs to a significant bad reading thus perhaps causing more problems. I personally do not wish to be saddled with another medication myself. I know we are all different and I think it is fair to say that if I was desperate with the itch then I would resort to certain measures.

There is some trail that was on-going or finished and it was to do with a possible new medication for the itch of PBC. I don't know how it is progressing though. There were several on-going trials for certain things in PBC (one for fatigue) and after awhile you start to get them all crossed with each other.

My way of thinking with PBC is that a possible way forward would be for someone to come up with a way to keep a control on the antibodies that most of us have (the AMAs) in PBC. Though it wouldn't be a case of us ever returning to a full normality it would create a halt to the PBC. This is mroe than likely a long time away, I expect someone has to find out how PBC starts up I expect first of all.


Hi Teddybear7

I have the itch on my arms which occasionally drives me to distraction and I find I am pushing my finger nails into my flesh. I try very hard not to do that to my face but sometimes I find myself scratching harder than I should. You say you cannot apply creams to your eyebrows. Is it possible that you could lubricate this area overnight to keep the skin more supple. I also itch around my eyes particularly the left one directly under the eyelashes. I use Optrex multi action eye wash daily and eye drops for the dry eye condition.

The specialist recommended antihistamines in addition to the Ursofalk (I notice another contributer suggests asking your doctor for cetirizine hydrocholoride tablets - when I googled it the tablet falls under the antihistamine group of tablets) I have found that sometimes I need to take two tablets a day rather than the one recommended but sometimes the itch is bad enough for me to take it twice a day.

Another contributor recommended doublebase gel, I have bought this product and found that the itching has reduced on my forearms.

Although there is no connection to diet, or so it would seem, personally I have reduced dairy products which seems to have worked for me. I now enjoy my cereals with almond milk and do not get the reflux which used to plague me.

Like Peridot I avoid those clothes which irritate my skin and rarely wear anything that covers my forearms which can be a bit tricky this cold weather!!!

I do hope you will find a balance which suits you, good luck and best wishes



I know how you are feeling. My itch got to the point where my whole entire arm broke out so bad it looked like I had a disease. It's from all the scratching. I tried gold bond spray. Powder. Cortisone cream. Etc... Nothing helped. I held off because I'm not a lover of taking more meds than I have to but it was a last resort.

I am now taking cholestyramine powder which I mix in a glass of water twice a day and it is a life saver. It has helped me 95% rid the itch.

I would highly recommend trying this if it is getting to a point where you cannot stand it any longer.

Best of luck


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I have had dreadful itch many times and found the only thing that helps is the CHOLESTYRAMINE powders Questran light. I knw it doesn't help everyone but t really hels me. Interestingly my consultant has recently advised me that he would like me to take it daily even when I don't have the itch.

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Thank you for your help everyone. I'm off to the gp. To see if I can get e45 on prescription. Lol no doubt he'll take my bloods again. He seems to do it quite regularly now.


Hi I have been prescribed hydroxyzine hydrochloride I started on 25mg at night and it was increased to 50mg at night and I've been on this dosage for over 2 years now and I hardly ever itch anymore, I do have the odd night where I do itch but they are very rare, hope this is of help


I take cholestyramine daily to keep it in my system so I don't itch. It helps :)


I find that I itch more if I haven't had a bowel movement for a couple of days. Try relaxing as much as you can it seems to help too.


Hi all, I take rifampicin, and it really helps:)


Hi Teddybear I too have the dreaded itch which is sometimes worse than others - it is definitely more prevalent at night especially as I am settling down to sleep. You can be rescribed Acqueous cream with menthol which does settle things down but you need to get used to it as it makes the skin warm after a couple of minutes before making it cool. The easiest thing to do is apply a cold damp cloth to the affected area - hold it on for a few seconds then remove. Don't dry your skin. It cools the area almost immediately. If the itch is particularly bad it may need another application or two. The temptation (particularly in my case) is to keep scratching but I have regularly hurt the skin. I hope that this helps - I realise that you posted your message 16 days ago.



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