Should i take Urso?

[cazz22]

Had the words you have PBC told to me by my specialists understudy.He told me about Urso but said it wasnt always effective in early stages(at time-Jan 2013 I had no symptoms but last few weeks developed liver pain and odd tingle.)I hate taking anything but of course would if necessary.As im new to pbc and forum Im still confused.Some of you seem to take it and swear by it some of you seem to think it makes things worse.Should i leave it till later on and/or try milk thistle first?My bloods are only slightly elevated but have been for years.I know you can only give your personal recommendations but would be really gratefull for your advice.

[Magnolia]

I have taken it for 10 yrs, and have had the disease for probably 20. I'm doing pretty well, for my scan looked good last year. I contribute it to the ursodiol. I don't know at what time it should be started, but I wish my had of been started earlier.

Magnlia

[bbobb55]

From what I have read in the literature and learned speaking to my physician, the earlier you start the medication the better off you are. I had never heard of the medication being more effective in the later stages, in fact I heard the reverse.

As far as the effects of the medication it is like all other medications, sometimes they just do not agree with a person. The only way to know for sure how you react to Urso is by taking it. Hope this helps. Bob

[1978louisa]

Hi, I'm at early stages, no symptoms (I don't think) and am taking Urso. It makes my liver results go back to normal. Partly why it took them so long to diagnose me. Had no real problems on it. If it can help slow it all down, it's got to be worth a try? Your decision obviously, so good luck.

[Hidden]

Urso is apparently questionable in use and I've read even described as 'controversial' with a PBC patient but it's the ONLY drug on the market that can help decrease elevated LFTs. It seems that for some it works great, others it seems to and then wanes.

I see urso myself as a supplement as it is a form of bile and not actually a drug. I never fancied being informed I'd be given a drug for a pill that I'd be destined to take for the rest of my life but at the time even tho' my LFTs didn't look as bad as I expect some with PBC do have them, they were abnormal and in the 6 month period during 2010 prior to diagnose each LFT showed an increase so they were on the up and up.

I personally do not 'swear by it' and even after 2 years on urso I am still a bit sceptical but whilst my LFTs are on the decrease (recent ones best so far and I've had a few ups and downs with them though not drastic alterations since starting), it's good enough for me.

I have always thought of a lot of drugs, they work for so long, your body gets used and then they slowly don't but I think with urso seeing it as a bile supplement to replace what isn't more than likely in a normal functioning level due to bile duct damage, I don't think it will somehow work like that. I think for some of us who unfortunately end up starting to become worse with urso it isn't due to the urso but due to the fact PBC is progressing further.

If you have been advised to have urso I'd definitely give it a go and in my personal experience on starting, despite the few side-effects I got at the start (heartburn and bloating, they vanished within a few months), once you get your first blood results given you got a read-out of the ones just prior as in figure-wise you'd see for yourself perhaps and if in a good way, that in itself is something to think about and continue with the urso.

By the way I did have 2 inclines but not much from Oct 2011 to Feb 2012 as at start I was having 3 monthly blood checks. I took it upon myself to include milk thistle the month prior to May 2012 bloods and they came back as good as and a few slightly better than how they had started to decrease when first starting urso Dec 2010. I have found myself with this bit of experimenting, it seems that the additional of a milk thistle daily and the urso are giving me a big difference as my recent ones, I'd had a dip Oct 2012 but after restarting milk thistle I had exceptionally good results Feb 2013.

[Cristina_Romania in reply to Hidden]

Hi,

Do you have the study or report where Urso in PBC is considered questionable , and does this refer to beneficial effects or side effects? I have not encountered this in the EASL or American guidelines so I would like to know what I missed about this. As far as I learned, as it is a substance that anyhow is naturally occurring and has been shown to be the only one who can slow down the progression of PBC. I am just curious where/ who stated this, thank you.

[Hidden in reply to Cristina_Romania]

Hello. I have read a few previous results and studies but it has been awhile about my mention of urso and it being 'controversial' and 'questionable'. Did read them on the internet but were from recognised medical organisations.

I recalled I had read the word 'controversial' in a newsletter from the Queen Elizabeth Hospital Liver Unit (UK) as they publish one online. There is a link for their newsletter specifically with regards to PBC. I have managed to find it as one can find at times unless you take note of the website as I never did with previous reading, it can be difficult to find again.

Here is the link:-

qesupportgroup.org.uk/Prima...

I personally do think that due to urso only being able to aid one with PBC and there not being a cure (at present) I do put that in a questionable category myself simply because there is no way of knowing eventually which way one will go, seems to vary between each individual.

[Cristina_Romania in reply to Hidden]

Thanks, good to know. The link you gave says "A drug called Urso has been found to be a help in a few patients, possibly in delaying the progress of the disease, but its use remains controversial. "

No idea since when the above information is, I just know both the EASL and AASLD mention that majority of studies say Urso is safe. Controversial appears to be still the potential benefit in combining Urso with other drugs, or for AIH overlap patients as far as I read.

[Hidden in reply to Cristina_Romania]

'Small amounts of ursodeoxycholic acid are found in human bile. After oral

administration, it reduces cholesterol saturation of the bile by inhibiting cholesterol absorption in the intestine and decreasing cholesterol secretion into the bile. Presumably as a result of dispersion of the cholesterol and formation of liquid crystals, a gradual dissolution of cholesterol gallstones occurs.

According to current knowledge, the effect of ursodeoxycholic acid in hepatic and cholestatic diseases is thought to be due to a relative exchange of lipophilic, detergent-like, toxic bile acids for the hydrophilic, cytoprotective, non-toxic ursodeoxycholic acid, to an improvement in the secretory capacity of the hepatocytes, and to immune-regulatory processes.

Ursodeoxycholic acid occurs naturally in the body. When given orally it is rapidly and completely absorbed. It is 96-98% bound to plasma proteins and efficiently extracted by the liver and excreted in the bile as glycine and taurine conjugates. In the intestine some of the conjugates are deconjugated and reabsorbed. The conjugates may also be dehydroxylated to lithocholic acid, part of which is absorbed, sulphated by the liver and excreted via the biliary tract.'

This is apparently how urso is reckoned to work as it is on a patient information leaflet for the Urosfalk urso tablets. I don't take this brand, I have the Wockhardt so my leaflet isn't as in-depth as this as mine focuses on gallstone dissolution as that is what urso was originally intended for use for.

[Cristina_Romania]

Hi there,

It is quite tricky to take such serious advice from a patient/ general public forum like this one, even if people are highly benevolent, there are not too many doctors around here.

Then, the overwhelming majority of studies in the past many years say that Urso is important to be taken even in early stages, even if asymptomatic, as it slows down the disease. British Liver Trust PBC guidelines, PBC Compendium are but a few of the authorised sources of information that say that as well.

Milk thystle can do good - BUT under certain circumstances, after seeking specialised advice about it, etc.

[Hidden in reply to Cristina_Romania]

Yes agree that it can be tricky taking 'serious advice from a patient/general public forum' and I expect everyone who is on here will take note of that as I do.

The one thing that I think though from a forum like this one is that it can give one some idea of how someone else is feeling with the same condition and also perhaps open up certain questions that they can then ask a consultant/GP.

I was also informed by the hospital doctor 2yrs ago that taking urso with PBC certainly won't do any harm as Oidra comments below and mine even went as far as to inform me also that you can go much higher with regards to dosage as what I was taking at the time (I've been prescribed 10mgs per 1kg body weight but I had the kgs rounded off as when I calculated kgs to stones and pounds I was actually slight less poundwise at the time but these days I'm also another 5 to 7 pounds lighter and that has remained so for the last 2yrs).

I don't think it can be said in all cases urso 'slows down the disease'. How I see it is the slowing process comes via the better functioning of the liver due to urso doing part of the job now so the liver can repair itself as best as possible thus giving one better LFTs. I think it is all down to when one starts urso.there.

I do take milk thistle and I know for a fact that from experience a lot of doctors and medics don't agree with certain supplements unless it is their suggestion. Yes I am wary of taking supplements regardless but after 2 LFTs that started to creep up just after I'd been on urso a yr., I decided to give milk thistle a try to see what the next 3 monthly bloods would give out. That was last yr. I then had after 6mths what looked like another slight creep up so started again Dec 2012 and my Feb LFTs were exceptionally good that does to mean say that this has to mean something.

[Oidra]

I was advised by my consultant to take Urso from day one (12 years ago). I was told that it may do some good and it certainly wouldn`t do any harm. As far as I am aware this is the only drug recommended for PBC.

[SC49]

My thinking is the same as Oidra - it won't do me any harm and it has the potential to slow the progress of the disease. The only 'controversy' that I have seen (so far) in is the research to date has been that the studies have been small and have not been conducted over very long periods. For those reasons, they can't seem to be able to comment on the effectiveness of Urso. However, it is an uncommon illness and Urso has been on the market for a relatively short time. To my mind, if it is showing a reasonable level of effectiveness and if it is safe, then I will be happy to keep taking it.

It is a pain in the arse to HAVE to take something - it's like losing a little bit of control over your life. I occasionally have a wee rebellious moment and I miss a dose.. just to prove that I can!

To my mind, anything that keeps the worst of PBC at bay is worth taking. I would take heroin i think - if I thought it would do any good

[SC49]

ps - my LFT tests showed considerable improvement after taking it for only about 6 weeks

[cazz22]

Thanks for all your advice.Go to see specialist in May and feel better armed now.

[Jeri]

18 months of 1250mg of Urso per day plus many diet changes has put all liver panel results in the normal range. I am stage 2.

[Hidden]

I was first given urso 10 years ago when I was diagnosed with end stage PBC and it made no difference. I had a liver transplant in 2004 and PBC was found in my transplanted liver 2years later. I was started on urso straight away and my results have remained stable ever since. I am sure that the most benefit from taking urso as early as possible.

[bobbycat in reply to Hidden]

Hi

That is interesting as you had a transplant....but pbc occured again...it must have been hard for you,,,,,I dont take Urso..felt unwell on it. I have had firststage for 20 years but blood count is rising a bit...due to all the pain killers etc for fibro.....so might try the urso again. I have read reports that it lowers the lft but does not give more than a year extra on a life span......do you think this is so?

[Hidden]

I have been taking urso for five years this time and so far have no damage so I would say that it deffenatly does prolong life. As far as the return of PBC is concerned a transplant does not cure PBC and the new liver in most cases shows signs sooner or later.

[Hidden in reply to Hidden]

Glad to hear you are progressing well with your new liver, as you say is not uncommon for the condition to reoccur, as the PBC itself is an auto immune condition rather than a liver condition, my brother has a slightly different Liver related auto immune condition PSC and also had a transplant, he has been told that the PSC has reoccurred.

I feel the urso helps the liver do it's job, so can see no reason not to take it, especially in the early stages. If people are suffering any reactions to the urso, I would suggest trying a different tablet or make as it may be the formulation rather than the urso, you are having a problem with. I was on the capsules and suffered terrible hives after about 9 months, now i am on the tablets and getting on well with it.

Good luck to all

Lou

[bbobb55]

Just to share a little hope with you all, here is a recent study that shows hope for those that are initially not helped by Ursodiol alone. They researched the use of colchicine or methotrexate with Urso and found very positive results. Here is the link if anyone wishes to read about it. druglib.com/abstract/le/leu...

[bbobb55]

Just FYI, I question the source that said Urso was questionable. After reading the material on PBC in the article, I noticed that they talk about liver function tests and then refers to LFTs. These are NOT an indicator of the liver function. The main factors that are monitored to give an accurate picture of liver function are: bilirubin, INR and albumin. This sort of shook my faith on anything else they had to say.