Newly diagnosed

[ETW1]

Hi everyone, can anyone explain the 'itch' to me please? I am not clawing my whole body but keep getting what I can only describe as little bite feelings in different parts of my body. Like an irritation I suppose I can only imagine it to be like having fleas!

[butterflyEi]

Hi ETW1

I think the so called itch of PBC can manifest itself differently for different people. For some they do claw at their bodies, some use rough surfaces for myself I started itching in 2014 nearly 10 years after diagnosis. My "itch" manifested itself mainly in my arms it felt like a sword fight under the skin sometimes, other times it is like hot pins under the skin trying to get out generally now it is a constant irritation in the way of hot prickles or little spikes at various parts of my body, sometimes it manifests on my face feeling as if I have just walked through a spiders web. The level of the severity of my "itch" has changed because I am now medicated. I take 2 sachets cholestyramine in the morning (it takes a while to get into the system) which did not stop the irritations so Naltrexone was added but it did not suit and Rifampicin was substituted, still the irritations were annoying and lowering so the hepatologist recently added sertraline to the mix. As I sit here typing I am aware of the the night niggles slowly irritating various parts of my body but mainly my arms. I also use a 2% menthol cream which as a topical application confuses the skin for a short while allowing for some peace.

I hope my description is of some help and I am sure others will be along soon who experience their itch differently.

best wishes

[ETW1 in reply to butterflyEi]

Thank you so much! Yes I get that spider web feeling on my face, also sharp pin pricking feelings. I will see how I go for now. Thanks once again.x

[DonnaBoll Administrator]

I so remember how awful that itch was for me!!! I wish I had an answer for you. Although there are theories about what causes it, no one knows for sure. Yesterday I posted a list of suggestions of things to 'do' and 'not do' regarding the itching. Something there may help. Some people never itch, no matter how advanced their disease. Others itch very early in the disease - no rhyme or reason. Hope you find even one thing that helps.