PBC DIAGNOSIS

PBC DIAGNOSIS

Many years ago, about 14 years ago ish, aged 40 I was diagnosed with PBC. I started with horrendous itching on the soles of the feet, actually the arch of the foot, then it came up all over the body. Nothing much was done, and after a while, it dissipated. I did take anti itch tablets, forgotten the name, and used washes. But for years not thought a lot about it, and although I have suffered severely with tiredness, i have had to work, due to being self employed, and not entitled to support. I am now diabetes 2, have severe diarrhoea and/or constipation problems regularly, and having checks for lactose and or coeliac intolerance. My toes are going numb, and the itch is now all over my body, with extremely dry skin, especially hands. Has anyone got any suggestions, and/or help, I am getting so upset, it is destroying my life again, but of course I am much older, and feeling low. I want to volunteer in Africa in May for several months, and need a good insurance also. Thank you in anticipation, I would also wonder do you have face to face groups? I live in North west Leicestershire. Many thanks Susanah

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  • you have been through the mill... well done to you for being able to manage all that.

    The PBC foundation has information about groups who meet in different areas. If you subscribe to their newsletter ( 'Bear Facts' I think) there are details of volunteers and groups that meet all over the UK and elsewhere.

    If your skin is sore and numb as a result of itching and scratching you might need to talk to your doc again specifically about the itching.

    Apart from anything else, if you are scratching all the time, you risk breaking the skin which provides a great route for infection. If you are volunteering in Africa, you will be exposed to bugs and things that you're not used to - don't give them an easy route into your system.

    I have very dry skin and the two things that have been of help are Bio oil (which is expensive but I've found it really helps) and Aveena products - not as expensive and still quite good. There is also a cheap version of Bio oil called (I think) Regen Oil. It's sold in SemiChem shops in NI - I don't know if that chain operates elsewhere in the UK. The Regen stuff is OK but nowhere near as good as the other two. I buy it in my poverty stricken months and it does the job.

    None of them stop the itching but they seem to make my skin better able to cope with the scratching

  • I use the Questron powder, taking 4 a day keeps it just about under control. I also experience some numbness of the toes, but hadn't connected the two. I see my specialist on Monday morning when I will ask the question.

    The post office provide me with ample travel insurance at reasonable price. Go for the annual deal if your going for while.

  • Hello susanuwdc.

    I was diagnosed Dec 2010 but started with the itch just short of 3yrs now, hence my visit to a doctor in the first place (as feeling fatigued and tired didn't actually register as at the time was working full-time and over the normal working day hours).

    My itch was all over my body in various different places on differing days and I still find today that altho' it is usually at night-time, when it starts up anytime from 10p.m. when I start with the mild itches that sort of build up, it can vary. It is the backs of my knees that I find intolerable at times, I can't sit with my legs under each other or kneel on the floor without feeling the prickles that then make me want to move about or my feet, esp my toes. My feet are normally ok during the day but once I want to relax after being on the go all day (I find it best with this PBC if I can) and I sit down to perhaps watch a movie around 9p.m., that is when my toes start feeling itchy.

    I do chuck some Epsom Salts into the bath and also at the same time pop some Cider Vinegar in. Not sure if it helps but I am convinced that it does give me some light relief later that night (I tend to bathe in the morning).

    Unfortunately I really wish I could help you out as well as other fellow itchers here but I'm no wiser myself. I do not want at this stage to take any other meds for the itch as that can be a bit of hit and miss. I believe you start on Questran which is cholestyramine and then after time if that doesn't work, you get tried with the next meds and then there is another.

    Just a thought could your toes be feeling numb currently due to you now being a type 2 diabetic? You'd have to speak to your diabetic nurse or consultant there.

    If you email the British Liver Trust regarding helath and travel insurance, they can email you a list that they know at the present time. MY son works for Endsleigh Insurance and they do do insurance for PBC sufferers apparently. I have seen Endsleigh on the Liver North website as if you go on there and find one of their publications, usually on the end page is up-to-date insurance co's who will endeavour to cover you.

    Good Luck.

  • Thank you for the insurance info, and all the rest, i will endeavour to check out Endsleigh as i want to volunteer in Africe this year. I hope all our problems resolve, or at very least, improve. Thanks Susan

  • Thank you everyone for your posts, all very helpful. I kinda thought i may have gone into a sort of remission for PBC, if thats possible? I guess along with the blood tests, i must insist on support at the health centre again. Thank you

  • I suppose to add further that with PBC one can go into some sort of remissive state but then if so we never know when it is going to rear up once again. For some with PBC they can reach that stage and it never progress any further, just come to a sort of halt.

    I also think that with age things can cause a new challenge to our systems and that is probably another thing we are going to have to address if we are still having effects (ie itching) from PBC.

  • Hi I also live in North West Leicestershire. As far as I am aware, there are no immediate local groups. The nearest one I think is North Derbyshire/South Yorkshire which meets up in Sheffield.

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