Hi.has anybody who has been prescribed urso not taken it,I suffer badly with medicine side effects so decided not to take it,c my liver

[Boysanboys59]

Specialist tomorrow.ive been diagnosed ist stage p b c after a liver biopsy in May.would love to hear from anyone with p b c who doesent take urso.

[Hidden]

Hello Boysanboys59.

Although I do take urso, I can't help wondering why you have chosen not to take urso.

I personally was sceptical back in Dec 2010 when I was prescribed at diagnosis. I presented to the GP with itching and at the time fatigued. (I no longer suffer with fatigue, well at present anyway.) I decided to give the urso a go and see what happened to the LFTs.

I was apparently said to be in the 'early stages' but I can't say the staging part holds my interest at all. I've not had a biopsy and I'd not want to know more anyway, I go with how I feel and how the blood work is.

I actually do not see urso as a medicine as such. I see it more of a supplement due to it being a type of bile. Urso can help with the breaking down of fats in the system because it is possible due to PBC we can have a bile flow problem with the bile ducts being affected in PBC.

Have you tried milk thistle at all? I experimented with it myself last year, I did get good LFTs twice using it and have continued on/off during this year. If in any doubt re this herb, it is best to seek medical advice.

Have you got a print out of your blood work at all to compare what they were like at diagnose and since at all to give you some idea of how they are doing at present.

[Ibiza2012 in reply to Hidden]

Hi, I was diagnosed in 2000 and like you suffer side effects of many medicines, I too was prescribed Urso at the time of diagnosis. Mixed with the thoughts of side effects and the fact I did not feel ill or poorly in anyway I decided not to take it.

Having recently been back to the specialist due to changes with my blood results, I have recently undergone a number of tests, I have now been told that should I fail to take my medication, I will ultimately end up in liver failure! I have now been taken Urso for one month now and have suffered no side effects at all. I have also just had a gastroscopy which has resulted in the discovery of 4 large Varices which have had to be banded, should I have my time again I would have given more thought to taking my medication.

Please think very carefully about ignoring the advice of your specialist, ultimately the choice is yours, but they are called 'specialist's' for a reason.

Good Luck

[operatic in reply to Hidden]

I take urso in 1st stage pbc because my liver enzymes were too high. They returned to normal for a long time but are rising again so need another blood test and see if it was caused by my other meds or stress?

[meandmypbc]

Hi,

I was prescribed urso and only took it for a week because I had bad side effects from it...I had no symptoms of pbc and wonder why they put me on it in the first place !! I also see the specialist on thursday so I will know what else if anything they have to offer...peridot has given me some other types of meds ...some on trial, some not.

But I know I cannot take urso and I take meds pretty well usually.

I will post on here options they give me.

I also have not been staged !!!

I was diagnosed through a boood test for a bad hand !!!

[Hidden]

I remember you stating meanmypbc you did try on urso,wondered though if Boysanboys59 actually had give urso a go at all.

I also know that even with urso myself there has been initial side-effect of heartburn with having different forms of it since starting 3yrs ago. My current 150mg ones that I had to have due to 300mg recall summer, caused this once again but appears to be settling down again. Goodness knows when I collect a new script for urso this week what I shall get in the form of 150mg tablets as read on here some keep getting differing brands now.

I find that PBC frustrates me more than anything. I find it very bizarre. I sometimes think of one thing to try out, especially with regards to the itching but it never seems to work and if I think it might be of some use within a short period of time I feel I'm back at square one again.

I do know one thing with myself tho', if I eat after around 7p.m. at night I find the itch can tend to linger beyond the 5a.m. that is normally ceases to be a problem (until around 11p.m. again). I think this has to be down to the fact bile is released when we eat and supposed to be used bile travelling back through the bloodstream that causes the itch so I guess it figures somewhat.

Several years prior to 2010 I did have an LFT taken at the GP as I found myself quite run down (and at the time in a dead end job that fortunately didn't last over 6 months). I was a bit short of iron and had a month's recommendation (I didn't collect the prescription as the ferrous sulphate was 6 times less OTC for the same on prescription). I didn't know about this LFT taken then but it can be if one is given iron apparently. According to the hospital consultant that LFT that was taken was 'slightly abnormal' but never mentioned by the GP and consultant said it should have been followed up but it never was. I did apply for renewal of life insurance at the time and the company got GP records and queried something. When I contacted GP about some blood test, he said everything was normal. That was probably the first sign a few years prior that I could have started with PBC but wasn't to know. It's also now why I do request a print out as anything untold I can ask about and unfortunately it hasn't actually put back much trust in the doctors....yet.

[SLWB]

I been taking Urso for nine years and yes there are side effects, but be strong, you do adjust. Urso can bring your levels done to normal or at least stabilize them. luck my fellow PBCer.

[Boysanboys59 in reply to SLWB]

Hi,thanks for your kind answer,I was violently sick on them, waiting to see specialist now. Let's hope he can help,wishing you well.

[paris190604]

Hi

I have been on Urso since 2005 I felt the same initially that as I react badly to most medications and have allergic reactions to even paracetamol I was sceptial however, I had to give it a go as I was in so much discomfort. For me it has helped after suffering several years prior to diagnosis without being given a real reason for my problem, until I got so fed up when I moved from one side of the country to the other and the young registrars didnt want to know, so I refused to leave the hospital without them reading fully the medical file I had taken with me. Suffice to say I saw a really great consultant who understood my concerns to all the negativity and I had a liver biospy, I have had two now and for me although the Urso does help relieve some discomfort I have a lot of other ongoing symptoms, which has resulted in what they are calling the overlap syndrome. Won't go into details just really wanted to say give the Urso a go oh and the others who have really helped me are the PBC foundation without them I wouldn't have really understood the long term effects and how to deal with the varying stages of PBC but nonetheless for that I still get on with life and am thankful that I have the Urso to help.

[Perkywerky76]

I took urso initially and felt more fatigued and my itching increased so it looked as though I was intolerant and I didn't take them for about a year- then my LFT's shot up suddenly and I was in talks with my consulatant about being put on the transplant list !!

I then took the urso straight away as I felt helpless and I've never looked back - yes there's side effects but you do adjust and even though I will need a transplant at some point I'm not in talks about at the moment or on the list - so my advice is to persevere !!!

[Hidden]

Although urso is for improving the LFTs and that in turn aids the stress on the liver due to PBC it does mean that our system can start to feel a lot like normal once again.

I only ever had itching and fatigue at the start in 2010. Fatigue has long since gone but still got the itch (night time).

I think if the urso can improve the itch somewhat as it has for me, I do think that it hasn't the ability to eradicate it fully due to the fact that a side-effect of urso can be pruritis which is itching so to me one perhaps cancels the other one out and that is why the itch only improves.

Apart from the heartburn since changeover of urso twice since Sept 2012 (brand name got dropped off the Urdox 300mg Sept 2012 so I was on generics and then a few months ago, presently on Ursogal 150mg, I've not actually suffered any side-effects since originally starting on urso Dec 2010. (I did have a bit of bloating back then but it vanished within a few months.)

It could well be fillers that are used in the makeup of the tablets/capsules as opposed to the actual urso. I've never been partial to taking tablets like paracetamol myself over the years, used to have the odd aspirin. I recall back in early 1982 had a pretty bad headache, my gran gave me Hedex tablets and shortly after I felt myself being violently sick. Only occurred with these so it must have been something else in them as I've never had problems with paracetamol the odd time I have taken. (I don't know how I'd be with paracetamol these days, not had anything in the pain of painkillers now since 2009. Lay off if at all possible.)

[Boysanboys59]

High ya ,thanks for reply, I've jus spoken to my liver specialist, and he recommends to try again, my side effects are so bad that what with my other illnesses I'm then totally grounded,but your kind words give me hope and I shall try to persevere , stay well an thanks .

[Jaycee]

Hi I was diagnosed after years of fluctuating blood tests, I took the Urso for about 18 months with no side effects, I then started to suffer with terrible side effects and through trial and error realised it was the Urso, I don't know if it was a different brand or not, I stopped taking them over a year ago, no more side effects, my LFT'S are normal,no one can explain this to me, I suffer with the joint pains and fatigue but thankfully no itch, so I will never take the Urso again,I want to be able to get through each day without the terrible stomach pains and spending my days in the toilet,as long as my bloods stay ok I'm happy and no worse off for not taking them, and the more you read on these pages you will see I'm not alone,but you have to do what's best for you, I would rather have a quality to my life and let the illness take it's course than live like that,life's too short,but I say again, do what's best for you, you know your body better than anyone else, Keep well and good luck, let us know how you get on

[Hidden in reply to Jaycee]

Hello Jaycee.

So good to know that your bloods are panning out as normal.

Your PBC sounds like it has become dormant to me. It is possible for bloods to return to normal apparently and then remain that way even by taking urso. It does also seem that you are currently asymptomatic due to what you have said as your joint pain could have been due to PBC and at the time lack of fat soluble vitamin (D in particular) absorption. Vit D as we now know on this site is for the bones.

Have you tried at all to change your diet? I actually had several of my LFTs start to decrease on their own from August 2010 to Nov 2010 which was about 6wks prior to diagnose of PBC and starting urso. All I can think is that I started looking after myself even better, being that bit more severe with checking foods as I used to be by abstaining from MSG and artificial sweetners (always been wary of). I cut further fats out of my diet and try to eat more natural. I think trying to have a good diet knowing you have PBC can make a significant difference and I am certain that these changes I started to implement later 2010 whilst living every day with the itch and at the time fatigue did have some impact on how my LFTs had dropped naturally without taking any urso.

[Boysanboys59]

Hi Jaycee ,i totally agree with you,and thanks for your reply.nice to know I'm not alone in this.i was diagnosed p b c in May this year after a liver biopsy.which told me i was in 1st stage i was given urso, tried to take but it made me dizzy and very sick so i stopped takin it , I had blood tests in September for another autoimmune disease the doc thinks i might have and my liver function test came back 100 less than in May and no urso .so i stopped takin it as it made me feel much worse , see my liver specialist this morning who asked me to give it another try ,whitch I will but if I cant still tolerate it I'll stop again an ? It, i like you would rather s quality of life than feel even worse than i do already,it didn't come as no surprise to me as I cant seem to tolerate most meds, even most antibiotics i cant take which when you are in pain is no joke .i i cant even take herbal meds,honestly I could have bought out my local chemist with the amount of meds I've had an cant take. I will try again and hope I can get used to them,if not like you I'll go without . By the way.love your dog, I have a beardie who is my constant companion .wish me luck.x

[Jaycee in reply to Boysanboys59]

Hi Boysanboy59, Nice to know there is someone out there that's the same as me with meds, I can't even take the Vitamin D for my osteoporosis,nor can I take the meds for it either,so I have all these problems and no meds, but hey, I'm still here and still smiling, and don't seem to suffer any more than anyone else,best not speak too soon eh, my dog is a Lhaso, I like beardies as well, take care and keep well, and good luck X

[Hidden in reply to Jaycee]

PS Jaycee, I had an 'one the line' Vit D results back in 2010. I wasn't offered Vit D supplements nor did I have any intention of taking. I started walking out in the sun more as I'd never been much of a sun-lover and by 2011 on recheck my Vit D levels were within normal range again. Even now in the UK winter is approaching, even a walk out in what sun we have is of a benefit.

I'm also on the go all the waking hours as I do think that might stem off the possibility of ay future bone problems plus I somehow seem to think it keeps the system going somewhat.

On the subject of dogs, I'm a whippet, greyhound and basset hound fan!

[Jaycee in reply to Hidden]

Hi Preridot,, Thank you for your reply, very interesting in what you are saying, I suppose if I think about it I am fairly a-symptomatic, it's true that we seem to put all our symptoms down to PBC when it may not be that at all, I see a new consultant shortly, the old one was useless, he was treating the illness, not me, so, we'll see what she says, but no matter what, I will not be taking the meds, will keep you posted, stay well.