PBC Foundation
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Can you please tell me does the itching come on all of a sudden and how bad can it be? The past few days I have noticed that I am itching everywhere. My joint pain is playing up and I seem to be itching with the pain. I'm not sure if I am imaging it, my husband as said its because my doctor has mentioned it.

Can it just start all of a sudden and if it continues what should I do? Thanks in advance x

5 Replies

Hi Fudger I have always had the itch it does come on all of a sudden with me it never left me day r night unfortunately but some people only have a little and mild. Mine varied a lot over the years. Thankfully at the moment it is mild and tolerable and I just take Questran Light for it. If you click on my icon and check out my blogs have discusssed on there what I feel helped it over the last 12yrs. Good luck dont put up with it when bad it would drive you crazy and I scratched so much in past I scarred my skin so now always keep my nails short so at least dont damage my skin. If it is very troublesome and persistant contact your GP Do not let them fob you off with anti-histamines these do not work in my experience I have tried many things over the years. People on here have mentioned Aqueous cream with Menthol in it I am hoping to get and try this this week. Hope you get relief from it soon.


Thank you Littlemo for your reply, I will look at your blogs. Xx take care


Back in early 2010 I started itching at random all over my body and a fortnight later it was still persisting so I took myself off to the GP. He ordered some blood tests but meanwhile after asking me what washing products, etc I used wrote a script for antihistamines. I noticed you could but the piriton over-the-counter, only took them a couple of days as they made absolutely no difference at all plus they made me feel very sick too.

On my return to the GP he said my LFTs were abnormal and more than likely the piriton wouldn't be of much use.

The itching continued and then I was diagnosed with PBC Dec 2010 and started on urso. After starting on urso I thought the itching felt worse but persevered with the tablets as one of the side-effects of urso can be itching!

The itching can become rather irritating and it seems to vary between individuals when you do itch. Mine is confined to night-time. It has improved with urso over time but just over 2yrs on and I still get the itch at night tho' it seems to be waning more and more and I go through periods of nights where I don't feel very bad at all.

I hate to say it but seems to be a fact that once you develop the itch it doesn't seem to go away. I'd say mine is tolerable at present but it has taken over 2yrs to be so and though I still get it, I've now had to put up with it for 3yrs.

The itch is definitely real and only one with PBC or other certain medical disorders would know exactly where you are coming from and what it is like. Mine starts with a somewhat mild creeping thing under the skin around 9p.m. and by 11p.m. normally it is at random about my body. My feet are the worst and it seems to be where your joints bend like back of the knees (I feel the prickles there in the day if I bend at the knees to squat down and hate it going shopping and having to look at something on a bottom shelf), the crook of your arm near the elbow. Even my chest itches sometimes but I have noticed that days I don't itch say near my elbow, I do some place else and vice-versa. Quite bizarre.

Like littlemo I too have some blogs where I've mentioned the itching as that for me is the bug bear of PBC as at present I do not have really any other symptons. I did orginally start with itching and fatigue but the fatigue long since left me. I do tend to flag at times but depends on what sort of night I have had that has a big bearing on the following day.


Thank you Peridot for the information, I have seen your blogs and read them, I have had PBC for 9 years and sufford mainly for joint pain, however for the past 4 days I haven't stopped itching, it is however over my painful joints. I am in a lot of pain at the moment with them, that I am off sick, which I never have time off.

I seem to be itching due to the pain, does this sound correct?

I am having a bad time at the moment and feeling really sorry for myself, I have been struggling with right clavicle pain for the past 10 months, and have only just found out that it is Osteitis condensans clavicle, I have not been able to use my right arm fully all this time. I went to my doctors yesterday in so much pain that he now wants to do more blood test to see if they are linked, as Osteitis is also a rare immune disease.

I just want to be pain free for a little bit, I am 33 and lately I just seem to be in pain with my joints. I Evan had to get my husband to wash my hair as I couldn't do it, how bad is that!!!

Told you I was feeling sorry for myself.

Thanks for listening xx


Hi again Fudger you are having a rough time of it. I have noticed over the years with the itch that when I have infection that also makes it worse. Might be worth visiting your dr to have your bloods checked for infection and to get something prescribed to help alleviate the pain and something for the itch. Good luck hope you get reprieve from pain and itch soon so you can have some degree of normality back in your life.


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