Itching!!!!!: Because a lot of people have... - PBC Foundation

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Itching!!!!!

Sandie1 profile image
7 Replies

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 !!!!!

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Sandie1 profile image
Sandie1
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7 Replies
Aga1981 profile image
Aga1981

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.

Sandie1 profile image
Sandie1 in reply toAga1981

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" ?

Kimmyk profile image
Kimmyk in reply toAga1981

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 ?

Debbweb01 profile image
Debbweb01

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

Debbweb01 profile image
Debbweb01

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?

gardner646 profile image
gardner646

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.

Kimmyk profile image
Kimmyk

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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