Is there anyone on here who has had pbc for more than 10yrs, suffered with the itch but never been on urso?

I have suffered with the dreaded itch for 11yrs and have been on urso all this time (apart from first 3 months of my pregnancy 6 yrs ago). I have managed to live with it all this time and using questran light has helped but have never gotten rid of it completely. Then from sep 2011- aug 2012 it became so intolerable was making my life so miserable that my quality of life was horrendous and so I underwent tests to be considered for the transplant list as no drugs were working to help it. I had the first lot of tests done in Royal Victoria Hospital, Belfast and was waiting on the call to go to Kings when I decided I could take no more and after reading somewhere i think on here that someone felt the urso made their itch worse I decided to stop it to see what would happen. Low and behold within about two weeks my itch had well settled and had become more of an irritation than something making my life unbearable. I went to y consultant told him what I had done and he agreed with me that if I felt better off the urso then I should stay off it but still wanted me to go to Kings to have their set of transplant tests as symptoms mainly the itch and fatigue were still fluctuating. I did, and just came back recently where the said as itch settled and tests all looked good I do not thankfully at this point (and hopefully never) have to go on the transplant list. Only thing is I do worry a bit that now being off the urso does this mean the pbc will progress quicker as the urso is supposed to slow down the progression. I hope not as I would really hate ever to have to go back on it and for the itch to come back to the same degree with a vengence.

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  • Hello littlemo.

    Well I have been sceptical about urso all the time (almost 2yrs) I have been taking it since diagnose 2010. I originally went to the GP with the itch, that was my only sympton really as well as feeling tired (but not so sure about that one, at the time I was working about 48hrs per wk in a managerial post. After quitting before diagnose the fatigue and tiredness improved dramatically and I have felt quite normal with that for some time, wish I could say same about the itch tho'!).

    Now the odd thing is that I have had periods since diagnose where I probably got very down about it all and did on the only day my husband and I actually got together, a Sunday (I work just Saturday these days) where knowing nothing was going on as such I would catch up on broken night's sleep, feel a bit sorry for myself and actually not eat the day so no urso was taken. Now I found that I didn't itch that night and for a few nights after and certainly felt a bit different. Of course I restarted the urso the day after not eating much but as stated a few days later the itch seemed to return.

    I was convinced after a few months of starting urso that it was making the itch worse but given I was having good blood results at the time, I decided to see if I could ride it out and take from there. I've not actually been that free of the itch for several days like I used to from around Sept this yr., seems to have been every night, some notso bad, others a bit irritating as you yourself will definitely understand as others on here do too.

    Your question about urso and it possibly slowing down progression of PBC well even the medical profession aren't that keyed up there and I have read it is a bit of a controversial treatment anyway. I know myself my blood results did decrease after starting urso and then started to increase slowly again after being on it for 6mths and it was only May just gone after a yr of the slow increase in LFTs did it shoot back down to what it was after a few mths on urso. The recent LFTs have got a slow increase again so it does make one wonder if it actually the urso doing anything?

    To me the only thing the urso does is introduce more bile in a synthetic form into our system which in turn helps with food digestion and processing.

    The complicated question for me is does urso actually speed up progression over time or does the rate revert back to what it was prior diagnose as our systems get used to the urso anyway?

    I have also read on the Ursofalk website about this drug (as I'm on a diff one due to my mgs being in 300mgs (I take 600mgs per day) and it does state that it can be possible for PBC to remiss once the drug is withdrawn so I suppose it is anyone's guess there.

    I know my urso have actually changed. I knew that myself within a short period of time of starting the next new 90 days batch I got Sept., I started having the same symptons I had when I originally started on urso and I think that might be why I'm feeling a bit more plagued by the itch at present.

    I really do think that one taking or not taking urso for PBC may have the same chance as when one thinks, urso can't cure us of the PBC. I still go with how I feel, shove the thoughts of all this out of my head. I'd prob feel even better if I wasn't taking any tablets (I only take urso) as that way I'd get on and feel more normal.

    I know some doctors will say to a patient that 'the benefits of a drug outweigh the side-effects' but I don't go along with that. If there was some drug out there now that would 100% positively give me an itch-free life now I'd ditch the urso and just have that and take my chances.

    The only thing I can offer you and I think you should keep us all posted is to go with your bloods and see how they progress without the urso, that way you're going to feel even more confident in not taking them if your bloods are proving something for now.

  • Hi, I am female aged 68 yrs , got PBC 10 years ago on 3rd October , I take 4 urso per day, was taking 3 per day up to about 2 years and for some reason dr. put me on the 4th tablet, I have only got the itch recently and only for a hour or 2 approx 2 days per month, I go to the hospital for checkups every 6 months and so far so good, am due back on 6th Dec, got blood test last month from my own dr, and he said blood test show slighty raised but not too worried, I get tired every so often but nothing major, otherwise i dont know i have PBC except the dr., told me, one dr, said that there are worse livers in A & E , hope this is of help, I am from Dublin Ireland and would love to hear from someone in my area, take care and good luck

  • Hi there. I am from Dublin, work there, live in Kildare. Diagnosed end May. Attend gastro clinic in Tallaght. Delighted to meet a few Irish on here. I love this online community. Other people's experience and advice have helped me no end. To tell you the truth would have been devastated for so much longer without it.

  • Hi Junolee, my number is 0872350637 if you would like to give me a call I could to arrange to meet you somewhere in town, would love a chat about PBC, thanks ... no hurry ... in your own time. Helen

  • I have pbc and aih. I tried urso first and eventually the side effects meant I had to stop it. Then tried every other drug specialist gave me and all did the same with side effects. Only thing I take is questran for the itch.

  • Azathioprine for aih

  • Ursodiol couldn't be my problem of the itch for I've used it for 9 yrs, and this year started with the itch.

    Magnolia

  • Thank you all for your replies I would truly love to see more up to date research being done on the use of urso in pbc. I will keep you all posted as to how I get on off it. In regards to the itch which I still have but a lot more tolerable than it has been over the past 11yrs I feel the questran light formula does help. I currently take one before and one after breakfast and one before andone after supper (usually bowl of cereal) and sometimes one around lunchtime. Other things that I feel have helped control the itch over the years are drinking lots of water (still, unflavoured 1-2 litres a day) eat healthily and small and often ( every 2-3hrs), avoid too much caffeine, sugar and spicy foods and keep my skin well moisturised ( and nails short so when do have to scratch don't damage my skin). Didn't learn all this overnight, but over a long period of time! Hope this is helpful to other itchy-scratchys like me!)

  • Thank you littlemo, I wish you the best of luck.

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