I went off the Urso last year as a last resort as I had had a horrendous year with the itch( much like yr had before was diagnosed) . I had read an article about a new drug being trialed for PBC and it mentioned that quite a few of the participants who had never had ich from their PBC complained of itch whilst on the drug. This drug is very similar in nature to Urso. So it got me thinking that maybe the Urso was making my itch worse as I had noticed a few months prior to this that when my dose of Urso was increased the itch got worse but I stuck with it as the consultant thought the higher dose may help the itch (think he was clutching at straws). Anyway as say was at the end of y tether with the itch my quality of life was appauling so I decided to go off the Urso completely. After being off the Urso for about two weeks, whilst the itch did not disappear completely it did become milder, more tolerable and well controlled just taking the Questran Light which had always been on for the itch.
I informed my consultant of what I had done (I was off it about 4weeks by then) and he said that if I felt better off it than on it, then I should stay off it considering that if the itch stayed at the intolerable levels it was at whilst on the Urso then I was facing possiblly being put on the transplant list for intractible itch.
Sadly though my LFTS have risen quite a bit including my Bilirubin since coming off it and am now considering asking my consultant at my next apt about going back on it even thogh I dont want to but neither do I want to end up needing a tranplant. When I asked about this at my last appointment was told that if I did go back on the Urso might only slow down the progression of the disease by a yr or two at the most. I was so shocked by this and the way the consultant was with me that day I asked by GP to refer me to another consultant so it is him I will be asking at my next apt in Jan. Ironic part is am feeeling fairly well apart from the itch seeems to be a little more in the last wk or so and suffering lot more with constipation. So just would just like to know other peoples experiences who are not on Urso in regards to how their livers (LFTs) are without the medication as if possible, I really dont want to have to go back on it. Any replies would be greatly appreciated. Thanks.
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littlemo
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Diagnosed with PBC in January 2008, never been able to take Urso, never had the "itch" either. My LFTS have never been that bad to be honest. In April this year, I was diagnosed with autoimmune hepatitis/PBC overlap. I was put on a course of steroids which has improved my blood results immensley.
Hi.i was given urso in may when i was diagnosed with 1st stage pbc.my consultant said to try it and see how it goes.this freaked me somewhat with my history of awfull side effects whilst taking any meds that i shelved it waiting for the right time to try.ie...hubby on holls as support if side effects were bad.due to other illnesses that i suffer from.there never seemed to b a right time to introduce a new med.as my pain was bad enough all ready.after having blood tests for an intestinal problem i suffer from the doc said my Lft.s had actually dropped from 245to 145.saying urso must be working.till i told her i hadn't even started it yet. Now I'm wondering weather to try it ,or speak to my consultant at the next consultation. Weather its worth the additional side effects on top of other pain.i suffer from mild itch an bouts of extreme tiredness.good luck with what u decide.x
Thanks ho11y and Boysandboys59 for your replies. I know everyone responds differently to medication but thought if posed the question would get a good gage of what way the majority of people are that are NOT on Urso whether the LFTS like mine go crazy or stay fairly stable without any any medicaion. I think probably very dependent on what stage one is at in the disease progression of their PBC and herein I think is my problem. I have never had a biopsy (not that I would want one) so I do not know at what stage I am and maybe this is something I also need to get an answer to to help me make my decision. Anyway will keep you posted on how I get on at my next appointment which is in Jan '14.Bfn. Take care. x
Hi Littlemo, I have never had a biobsy either, I'm not allowed one, because for some reason I bleed internally very easily. This bothered me because like you I would like to know what stage my PBC is. But, as somebody pointed out, they only carry out the biopsy on one part of your liver (another part might show something different), so, I have just tried to get on with it and not worry about it too much (easier said than done, I know!) When, I was first diagnosed with PBC, I was seeing my consultant every six months, then it went to a year. Certainly it's been a bit more frequent since April (I will have seen my consultant 3 times by my next appointment in October) but that is because of the Autoimmune Hepatitis diagnosis, and the tablets have to be monitored, because they can cause more problems than the illness itself!! Good luck with your next appointment x
Thanks Holly I really just go on how I feel and apart from the itch rearing its head little more this past couple of weeks am feeling grand thank God long may it continue. Bfn.
Hi, I stopped taking the Urso last year, and am so much better without it, blood results since then have been very good, no changes, I am very fortunate not to have the dreaded itch, but I have no other symptoms apart from the fatigue, my GP is aware as is my consultant that I don't take it, I see a new consultant soon so she may say differently, but no matter what she says I will not be taking it again, The Urso made me so unwell, really bad stomach pains and horrendous diarohea,( don't think I spelled that right) but nothing on earth will persuede me to go back on it, but we are all different so make sure every one knows what you are doing, Good luck and stay well, let us know how you get on
Thanks Jaycee all the medical folks know I am off it but as said since coming off it the LFTS are very high so the Urso must have been doing something though mine never went down to normal during the ten yrs I was on it like I have read a lot of people on here found after starting it. So in my opinion it must really depend on the stage you are in the disease as to how well or not it works. Will keep you all posted thanks again.
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What is the brand name of your URSO if you had the itch upon starting and how is your prescription for it written.
