Just diagnosed

Hi I have recently been diagnosed with pbc after spending a month in hospital as i went in with jaundice and severe itching which felt like i was being stung by nettles all over I even came out in a rash and am now scared from the rash. I have been out of hospital now just over a month and on my second out patient appointment was told I had pbc I have been on ursofalk 250mg three times a day and am now on 500mg twice a day. My itching has started up again and I'm unsure if I should contact my consultant as its the same stinging sensation. Really don't know what to do so any help or advice will be greatly appreciated

Many thanks and eveveryone take care x

18 Replies

  • HI, My first bit of advice is not to get too stressed, take things as they come PBC affects folk in different ways. There will be a few changes in your life style but nothing too drastic. Chat on here ,ask questions there is a wealth of experience on here. Be positive and take care..

  • Thank you for replying to me. And thank you for the advice. Much appreciated take care :)

  • Hey brummi - haven't spoken to you in a while. Hoe are you feeling?

  • I would contact your consultant and tell him what's happened but I do agree not to stress out to much it doesn't help. By talking to your consultant it will ease your stress. Keep us all in the loop on how your doing.

  • Hi Lilbear89

    Welcome to the group.

    As I understand it when first starting Urofalk it can cause the "itch" (for me it is like a burning sensation of sharp little needles). @Brummi has certainly got it right as has @jude1. I would contact the consultant, probably through his secretary, for help.

    If you are not already a member join the PBC Foundation through their link at the top of this page. It has a wealth of information in the members section.

    Liver North is another good source of info and help


    There are other sites which have further information but I would not get to hung up on PBC at this early stage as stress can have an adverse effect on the so called itch.

    keep us up to date with what is happening,

    best wishes

  • lilbear 89 So sorry to hear about what you are going through. I have years of itching behind me . Sometimes it is like unbearable. I think it has to do with the build up of the bile. I try and eat very healthy and gluten I cut out completely from my diet. And another thing, if I stress, I itch more, but I notice with PBC patients each one is different. I also put epson salts or bicarbonate of soda in my bath water. If you rub your body with castor oil, I find it makes skin soft. I wish you can get a solution quickly. The outside world (non PBC) do not understand why a cream would not clear up the itching or they tell you, just try and forget it. It is sheer hell, but luckily not painful. So in the end there is, I suppose, always something to be grateful for. You have my sympathy

  • Well said Rockie.

    You are right there in saying that a cream will not clear up the itching as persons without any liver issue who do not have to endure this itch cannot understand that it comes form inside the body and it isn't a skin problem (until of course we itch and cause blood spots, etc).

    Yes agree the itch isn't painful, just a nuisance. I sometimes find myself suddenly jumping if I feel that awful prickle sensation. Try to explain to someone that you can itch the place where it is at the time but it doesn't seem to make much difference and then as you are 'dealing' with that spot it starts elsewhere then!

    I find Epsom Salts used in the bath can be a good aid. used bicarb of soda previously but found it made my skin feel quite dry afterwards unlike the Epsom. You can buy Epsom Salts specifically for bathing and I'm in the UK and Holland & Barratt sell them as does the company directly online (they are a London co). I find the large drums work out cheaper than the little ones in the chemist for as I read for another medicinal purpose.

  • Hi Peridot. Long time no talk between us. I am in South Africa and just buy it from Grocery Store,but you right it would work out cheaper if I could buy Epson Salt in big container. I must agree with you, have found the Epson Salts more effective. You know, someone on our Page mentioned 100% pure Olive oil soap. I am using it now for about 2 months and really my skin is softer and the eczema I used to get on my hands for many years, is also now much better. The soap comes from Turkey. Wish you a good week

  • Hello once more Rockie, likewise.

    We can buy a soap that is olive oil here in the UK, think it goes by the name Oliva. I have had it in the past. I have tried various soaps since developing this PBC. I have bought mail order from a company here in the UK called The LIttle Shop of Soap and they are handmade. They sell one that is made with oats that does make your skin feel soft and it is said to be good for eczema.

    I find adding some runny honey and also throwing 3 camomile teabags into the bath water makes my legs in particular feel soft after. I have found since itching these past 6yrs now my legs feel bumpy. I more than likely irritate the hair pores and sometimes I can have the odd blocked pore that then leaves a small scar when all healed up.

  • Hi Peridot. It is just a condition that we know we will have for ever. For me, the lesser I stress, and avoid gluten, the lesser I itch, but remember I am over 75 already. Cannot let this PBC take over my whole life. I have a friend with kidney cancer (37years old) and she is an inspiration for me if you see how she is fighting that dreadful disease. Go well

  • I had severe itching for about 6 months, My PBC was discovered probably 10 yrs ago, but was never exposed to itching till this past Jan. 2016. I take ursodiol 500 mgs 3 times a day, recently I started taking benadryl for allergys & seems to help alot, I was told per my Dr. to try Zantac or Tagament, supposably there is something, (they don't know what) that helps the itching, I took my first dosage today, so I will keep you posted. also ordered the E45 cream I have read about in this site on the net, seems the combination of all, I am happy to say, I have had some relief for sure!! Best of luck to all who are going threw all this, I don't worry much about my PBC anymore since I have had it for so many years @ I feel good for the most part. with the exception of the itching, which seems like it's getting better.

  • IIovetacos2 I am so glad for you that your itching seems to be under control. Anti histamine does not really help for me because the trouble is in the liver, but I try and do everything to protect my skin from all the itching. E 45 is good, everything without perfume. All the best

  • My problem is in the liver as well, PBC..the Dr. told me the reason that the Antihistamine is helpful with the itch is unknown, but evidently has something in it that does help. I am currently taking 150 mg of Zantact, again I am unsure what at this point, seems to be helping me, but I am certainly grateful, & happy to try anything that helps with the horrible itching. My allergist put me on Naltrexone HCL 50mg 2 months ago. At the beginning there was no relief, possibly this is also a factor.... Best to you as well. :)

  • Questran light will alleviate the symptoms..

  • I get the rash on the side of my face and under my chin i have had this for a couple of years i always put a cold wet flannel on the itch or something from the freezer for a couple of minutes,i got diagnosed 12 years ago with pbc,i hope this helps.

  • Hello Lilbear89.

    It could well be the urso that is causing you to feel the itch as it can be a side-effect (pruritis). When I was diagnosed with PBC December 2010 I had spent from March that year with an intense itch pretty much anywhere on my body.

    For the first few months taking urso I thought the itch had worsened and I also got a bit bloated and suffered heartburn, health issues I'd not had pre-urso. I continued taking the urso and got good blood work within around 10wks of starting the urso so continued taking. Over time the itch for me has subsided somewhat and I tend to have it mainly at night time now. Still an inconvenience as it causes broken sleep but it is far better than it was in 2010 when it was practically 24hrs a day.

    The thing is itching can be and is a sympton of PBC (and other liver disorders that also exist) and it's not said that urso can eradicate itching (the same with fatigue) but it can only improve how we feel and more than likely due to the urso helping a compromised biliary system thus aiding better digestion.

    If you feel the itch is not improving then you can go down the route of trying certain medications. The normal one to start with is Questran (brand name) or colestryamine (I am in the UK). I've not yet gone down the medication route to see if I can rid myself of the itch simply because it seems that they can be hit and miss, work for some but not others.

  • Lilbear- ask your GI for a script for hydroxyzine. I am stage 4 and it works beautifully.

    Stay positive and find the joy in life....you can live with this for years.

    Good luck,


  • There are things to help with itching I would ask your consultant. Good luck

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