Hi, could any of you please describe the itching, tricky i know, only i experience itching from time to time which i kinda put down to random normal..?? or washing powder irritation, basically kinda asking if i'm getting the itch as related to PBC!
Bear with me, not very good at explaining myself!
Hello leighroy.
I started itching early 2010 when I was 45 and by December that year I was informed I had PBC. I was 46 then.
The itch used to be in the early days pre-diagnosis and just after diagnosis 24/7 but over time I just started to itch later in the day. Being not long 8p.m. at present, I am starting to feel the prickles of it. By 11p.m. I will be into itching state and then it presists for me until around 5a.m. I can sleep far better around 5a.m. and then struggle to get up when I do not feel itchy.
For me I describe the itch as rather like rolling around in nettles or perhaps being stung by several wasps at random over the body. There is no rash with this itch, said to come from inside the body. My theory is that it is the used bile acids reacting with the tiny nerve ending all round the body, that is why the itch can be felt anywhere.
I find that morning when fully aroused I am fine, raring to go. Slowly during the day I start feeling fidgety and when I feel the itch I find I cannot sit still or relax long as seems that a body resting is when the itch rears up, moreso on the pressure points as we sit/lie.
The itch seems to vary in severity between everyone who experiences it with PBC. For some it is mild, others who are very fortunate never experience the itching. Urso and fatigue are the 2 commonest symptons of PBC and they are also something that urso doesn't tend to rid us of. Itching in my case improved over time, I think that is because the urso is compensating for bile that can leak into the liver in PBC and the digestive system is then more balanced. Due to this improved bile flow for me the itch has lessened. Hope this has explained how I feel but others can state it slightly differently. I have heard on this site a few say it feels like something crawling under the skin, now I can also realte to that but for me the prickles I do find I have to rub/scratch do feel like stinging nettles or wasps.
Thank you!
Hi you can't see anything & when I first got it the overwhelming feeling for me was that it really did feel like it was coming from the inside..outwards. I use e45 cream (not lotion) & e45 itch relief for bad spells. Does ones head in & there are times when you just have to scratch. Xxx
thanks
My itch varies from a deep desire to cut out the insane irritation on my arms to a light brush of irritation to wipe from my face. Occasionally I stand in the doorway and relieve the itch by rubbing on the door jamb. Sometimes I try to ignore the itch and other times I take anti histamine, the drowsy type, the one a day type no longer work for me. There have been a couple of recommendations on this site which I have taken on board, one is to use doublebase gel mostly on my arms, take the antihistamine in addition to the Ursofalk. I have four cups of coffee in the morning and I try to stay stress free.
I went away for three weeks just recently and the itch mercifully disappeared but since being back the itch has slowly worsened but is no where near as bad as it was before doing all of the above.
Hope this is of some help to you
best wishes
thanks, off for a nice holiday break soon, i'll see if this makes a difference!
happy hols, hope it makes a difference - let me know, if it does then perhaps it is the basis for all of us PBCs to have a permanent holiday 
best wishes
Hello leighroy.
If you are going somewhere hot perhaps you may see a difference with the itch. I know some on this site have stated that in overseas countries (I am in the UK and North West so sunshine can be that bit less 'up North'), the sunshine seems to have kept the itch at bay during the day.
For me I've found in the summer heat up to now it's made me feel that bit worse. For me I find it is best feeling cold. More than likely as the cold numbs the itch sensation and the skin pores that bit more closed perhaps?
I have noticed in the last 6 months with myself I've felt less prickly during the day but I seem to be on the go all the time so whether that it is or it genuinely is the itch has subsided almost completely in the day (might not itch but do feel prickly at times) I am hoping that now we are in warmer temperatures I don't feel prickly in the sunshine. Of recent I've been having lunch outside when it has been sunny and so far so good.
I bought a little solid stick that is designed for headaches, just rub over your forehead. Mine isn't the brand you can buy at a pharmacy but one from a town pound store but pretty much the same ingredient-wise. I have tried that a few times on small areas of my body I know are prone to feeling prickly and the sensation of the methol that it contains does in fact seem to distract from it.
I find the itch is worse when I get hot especially at night as soon as I get into bed, mine sort of travels upwards from my ankles and within 30 mins or so I am itching from head to foot, i have even got out of bed and put cold flannels on my arms and legs and i could rip my lower stomach, ankles and thighs to bits sometime, rubbing cream in does not seem to do any good. I also take Piriton, the drowsey one as this helps to knock me out, I am starting to itch now just talking about it. but overall I am worse at night.
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