PBC Foundation
6,611 members5,737 posts

What is the itching like?

I am waiting to find out if I have PBC, I have some symptoms which are fatigue and muscle pain and weakness, the AHA is positive, am deficient in vit D and have elevated bilirubin (all other LFTs normal). I was just wondering what the itching symptom is like? Obviously not very nice but what sort of itch is it?

I have itching on my legs all the time but nowhere else and I've always assumed it was eczema and still do, but having looked into PBC just wanted to check my eczema assumption is still probably correct!


3 Replies

Hello KathryH34.

Well I started with the itch originally Oct 2009 and then within a fortnight it vanished and I thought no more.

I then started itching again in March 2010 and unfortunately that wasn't to go away, hence the GP visit, bloods, etc... For me it was mainly on my arms up to my elbow and my legs (especially the back of my knees when sat down and bent) and at night my feet/toes.

I'd not wish it upon my worst enemy. For me it feels like I'm either being stung by wasps or rolling in nettles! I know if I start to rub/gently scratch an area I'm itching, it then starts elsewhere on my body.

It has subsided somewhat since taking urso Dec 2010 at diagnose but I still suffer at night, normally start feeling the pinch around 8p.m. but that doesn't bother me, it is around 10.30p.m. it starts to come on strong and if I am still up and watching tv before retiring then I can't help but fidget.

If you are started on urso as I think you might not be at present (?) then chances are over many mths as taking urso symptons start to take that bit longer to improve or not improve as can be the case.

Unlike yourself prior to diagnose and at diagnose my LFTs were abnormal and still are but not overly-so apparently. I have a normal bilirubin currently and have since prior and also at diagnose.

I presume you mean the AMA blood test that was positive? Mine had a high titre of AMAs to give the diagnosis along with the sympton of itching and at the time fatigue (which has for me fortunately vanished over time but got to remember the yr I was diagnosed I was working over a long period of many months at around 48hrs per wk in a managerial (retail) post).


For me the itch isnt like the sort of itch you have if something irritates,,, its hard to explain but its like deeper? To me feels like ants inside... no matter how hard you scratch it doesnt go away and when its really bad I end up using all sorts of scratchy things to 'get at it' I am lucky however as the itching bouts have been short lived when I have had them... I do have a bit of psoriasis and also have Lichen Planus.... and the itch from those is quite different. Not sure if that makes sense...


Thanks for your replies, they help. Sorry yes I meant AMA. Just had a very infuriating visit with my GP, just posted another question!


You may also like...