PBC Foundation
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Because a lot of people have never heard of PBC, I find I am making excuses for myself, especially the tiredness and itching, they say I look so healthy, but I don't feel it. The itching in company is embarrassing, I try not to scratch! but carn't stop myself, (what do people think) then I I try to explain myself. The tiredness is annoying, just don't want to be sociable sometimes, and I always enjoyed socialising before PBC. I am not really moaning but feel better getting it of my chest !!!!!

7 Replies

Hi Sandie,

I know what you mean. We all usually look very well and healthy and people usually cannot understant that we're really sick.

I gave up being social since I'm usually tired in the evenings and I don't drink.

I have a question to you and enyone who could be helpful. How does your itching look like? Dose it itch only from time to time? or at a particular time during the day? I've been sratching my legs for some time. And I always thought it's because I shave them and the hair grows back but I'm not that sure right now - I spend every evening scratching my legs and I start to think that I was fooling myself and it's more due to the PBC than shaving.


Thanks for your comment Aga1981, I have the itching most of the time, not so bad through the day, but sat on a evening is the worst, I usually put a cold cloth where severe, helps a little bit. I also have itching on my head is that "normal" ?


Hello, I wanted to find out what type of rash you have. I've had little pimples to urticaria . It's been very itchy and it's now all over throughout my body and I have crawling sensations. I've been wondering if this could be the polycythemia . I wanted to see if you try Xolair to Block histamines ?


You can moan I itch too from another rare blood disease PV/Polycythemia Vera! U can moan and groan all u like ! Where else can we do this! No one listens who don't walk in our shoes anyway! They just can't handle it all! Godspeed

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I'm sooo very confused! Shud I chek for PBC cuz my itching get outa control! I just hope it's from PV/Polycythemia Vera! Weird that other things can make u itch?


I sympathise, I have exactly the same problem with the itching. However, I have found that as long as I take one anti-histamine tablet per day (cetirizine) the itch is kept well under control - my GP was happy to prescribe it for me. If I forget to take it or run out the itch returns immediately and with a vengeance! The last time, I scratched furiously the back of my hand and between fingers, my ankle, an area on my shin, the top of my foot and both wrists all in succession - not at the same time. There is no rash as such, just a slight redness which possibly indicates inflammation. The fatigue is by far the worst thing about PBC. I also feel ashamed and frustrated that it has such a significant impact on my social life. My husband died nearly 3 years ago and I need to to get out and socialise again. I'm so very lonely and people have no idea the effort it takes for me to function normally. I could go on but I know that I'm very fortunate that I'm comparatively fit and healthy for my age group and I could be a lot worse off. Take care of yourself.


Hello, I wanted to find out if any of you have had a rash or hives . I've been struggling with this for the last six months . I was told that I may have scabies, I have even been treated for it many times . I have been to 5 doctors who can't figure this out. I still have the rash and I said from the beginning to the doctors, could this be from polycythemia vera . Has anyone else had a rash that comes and goes and feels like crawling all over there body? Has any tried xolair to block the histamines?


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