Just a question... about stopping ursodiol

[jmhaskins]

I am taking Urso for PBC. I am curious what would happen if I just stopped taking it. Before you start shaking your head I know the Ursodiol is supposed to be slowing the progression of the PBC etc. I want to know what would be my likely and immediate effects. Most notably I'm wondering if liver enzymes will elevate.

[Hidden]

Hello jmhaskins.

I started taking urso back in Dec 2010 when I was diagnosed with PBC (I started itching early 2010 that led to being informed I had PBC).

My LFTs (liver function test) and the GGT bloods were all abnormal (I am in the UK) and though they didn't rise drastically in the 9 months I was having bloods taken prior to diagnosis nor on urso, after starting urso they started to drop, rapidly in the first few months and then they slowed down by the end of the first year on urso.

Now I am not sure if I can say for certain with regards to someone stopping taking urso if their LFTs and GGT would start to rise again but it is more than likely I would say. (I'm no doctor remember and PBC I have found since diagnosis seems to be a bizarre sort of condition in that we all seem to vary in symptons that some have them (ie itching and or itching/fatigue are the commonest) and we all seem to react quite differently when we take the urso.

My LFTs haven't returned to normal in the last 4 and 1/2 yrs on urso as yet but they seem to be coming down still.

I say I am not sure if mine would start to rise again if I came off urso as I think at a certain point in being diagnosed with PBC - I was said to have not developed it long since I started itching, my scan was looking normal, bile ducts were said to be seen and good and my LFTs and GGT weren't really shocking plus I just had itching and fatigue back then. I was 46 at diagnosis - it might be a bit difficult to tell.

I noticed when I got my print-out of the bloods Dec 2010 that in the period I last had them taken at the GP surgery Aug 2010 up to having them taken again at the hospital on my first appointment there start of November 2010 some of mine had naturally gone down by themselves as I didn't have a diagnosis nor had urso.

I think the slowing of PBC by taking urso comes from the fact that by introducing a component of bile, well as I understand it, the improved bile flow lessens strain on the liver and it can start to repair iteself which in turn makes one feel much better.

I also thnk someone coming off urso might also have the other influence to their LFTs and GGT if they are on other medications as some, maybe most can cause LFTs to elevate anyway whilst on them and also any other outside factors than can also have an effect on the LFTs too.

I know in the latest Bear Facts the chapter on ursodeoxycholic acid does recommend that one stays on urso even if their LFTs and GGT remain to normal when taking it. I think once we are on urso it is expected to be taken for life unfortunately. I've never been happy taking it but I did in the beginning just to see what the LFTs would come back as when I had my first bloods done after.

[varsenik]

I have been on Urso for 8 years with no issues and was followed up yearly with a blood test. My liver enzymes were marginally up when diagnosed and have been stable all these years. They came back down to normal within 2 months of starting the Urso. Out of the blue I had intense itching all over at the start of this year. From scalp, eyes, lips, nose and whole body like an allergy. My hepatologist reduced the Urso for 8 weeks and the itching slightly lessened but liver enzymes creeped up. I was taken off the Urso completely for 6 weeks and itching disappeared after 1 week. But unfortunately liver enzymes increased and high. So back on Urso and itching started with a vengeance, but on Questran and anti-histamines now. I am slowly increasing the dose weekly. They think I have become intolerant to Urso. I had a normal fibroscan and ultrasound. Going to have MRCP scan next week to make sure no gallstones and look at the bile ducts. I believe that the Urso has been supporting my liver and keeping liver enzymes stable and without it liver enzymes gone high. Hope this helps.

[dianekjs in reply to varsenik]

Coarse ok, have you tried a different brand/manufacturer? I think the fill ingredients are often responsible for intolerances, and they vary from one formulation to the next. Just a thought. Hope you find a solution soon.

[varsenik in reply to dianekjs]

I have had the same brand and the same chemist throughout the 8 years. I spoke with the company to check if any of the fillers have been changed and even gave them the batch numbers of the containers. They sent me a written report to say there had been no changes and did safety checks. So I changed the brand on recommendation and the itching still continued. I have now gone back to using original brand.

[dianekjs in reply to varsenik]

Sorry for auto-correct misfire above, bizarre. It was just a thought, because people do develop sensitivities that were never issues previously. I ate and loved raspberries for many years, and one day ate a small bowl and broke out in head to toe hives and haven't been able to handle even a drop of raspberry in a sauce ever since. If you've developed some sort of intolerance, it could just as easily be to one of the fillers as to the Urso itself, in which case a trial on a different formulation might not hurt, if just to rule out that possibility. Hope you get it figured out soon!

[varsenik in reply to dianekjs]

Yes, I was just saying to Peridot that my GP mentioned how a person can develop an intolerance to strawberries after many years. So glad you mentioned this as well with regard to you having raspberries.

I did change the brand to Ursofalk and the itching continued, so it must be the Urso. I just feel that I am caught between a rock and a hard place as without it my liver enzymes are high. The hepatologist was going to keep me off Urso and monitor bloods closely, but with it going up as soon as I came off it, she said I must battle on. So I hope that my body will see sense and realize that we need the Urso!! I hope that it will settle down. Thank you so much for your kind advice.

[Hidden in reply to varsenik]

Hello varsenik.

I think this could be a bit tricky regarding itching as purititis as it is known is one of the commonest sympton of PBC (along with fatigue). You might have developed the itch over time with having PBC.

Not sure if urso can start to have side-effects after so much time.

You wasn't given a different brand of urso at all was you? Or different pharmaceutical if generic urso. As dianekjs states here, it can be a case that sometimes the other ingredients that are known as fillers in medications can be the cause. I had a problem myself back in 2013 when my 300mg urso was withdrawn. I started taking urso Dec 2010. I had the same pharmacuetical company until the withdrawal and then had to be given 150mgs as no other 300mgs about at the time (as far as I am aware here in the UK there isn't as yet).

I was given generics and boy did I have bad heartburn that persisted for the whole 84 days supply. I then asked pharmacy for a different one I knew of - Destolit - and they obliged that one time. I had no problems taking that one. I ended up having to have my GP issue prescriptions with the brand name as otherwise I'd get the generic with the prescription being written just as 'ursodeoxycholic acid' which means a pharmacist can give you any, generic or branded.

I was prescribed antihistamines back when I first presented to my GP with itching early 2010. Of course I was informed that they'd not touch the itch due to it then being found I was encountering a liver problem and not an allergy. (I only took the over-the-counter same tablets as prescription (cheaper to me) for a few days and was so nauseous I gave up.) Questran is apparently the first line of defence for the itch. I still itch 5yrs down the line but it has confined itself to night time with prickles during the day depending on what I am doing - direct heat, clothing, etc - so for now I've not resorted to any medications to see if I can eradicate it.

Interestingly my itch was more severe back in 2010, it was 24/7. After starting urso Dec 2010 I did think the itch was worse for a few months but slowly settled. Urso can actually cause one to itch, hence I asked if you might be taking a different brand of urso.

[varsenik in reply to Hidden]

Hi Peridot,

In 2003 I had slightly raised liver enzymes and my GP told me there was nothing to worry about! When I was diagnosed in 2007 aged 46 my raised liver enzymes were found during a routine blood test. I had no symptoms of fatigue or itching.

I agree that Pruritis is a common symptom of PBC with some people never having it and others can develop it after many years. My hepatologist immediately suspected the PBC. The strange thing is that when the dose was reduced the itching lessened and when stopped for 6 weeks it disappeared after 1 week and I forgot all about the itch. So now they feel it is an intolerance not an allergy. I have also spoken with Professor Jones (not my hepatologist) and apparently it does happen but not often. My GP has said that a person can eat strawberries all their life and suddenly can't eat it as the body becomes intolerant. The nurse in my GP practice was telling me that she loved apples and now she cannot eat them as it makes her lips swell and tongue itch.

I have spoken to a pharmacist from Ursofalk and was told that this can happen and to stop altogether for 1-2 weeks and slowly build up the dose 300 mgs for 1 wk, 600 the 2nd and 900 the 3rd, which is what I m doing now. I did change the brand from Ursogal to Ursofalk but the itching continued, so back to the old brand. I have also been told that the Urso can cause itching.

I am glad that your itching is much better and settled. Thank you so much for your advice.

[Hidden in reply to varsenik]

Hello varsenik.

I suppose thinking more now, it can be possible for someone to develop an intolerance to allsorts of things even medications over time.

My late father was hospitalised several years prior to his death with itching and horrible looking skin that needed frequent treatment for about a week. It was due to penicillin. He had not been allergic prior but then developed an allergic reaction to it.

I know I've had penicillin in the past but not since 1999 and I wonder now if I'd have any reaction to it with having PBC.

I was recently reading an article in an online UK newspaper about foods and allergies (not sure which now) and it is thought that due to certain foods being available all year round as opposed to when in season like when I was growing up in the 1970s (though I was born in the 1960s I cannot recall the decade, was too young), this could be the cause.

[Debbiem40]

I was told by Professor Neuberg at QEHB last week that they don't have ultimate proof that Urso does any good. He said if you had 2 patients with meningitis (for example) and you gave only one of them antibiotics the other onewould die. fact. but with Urso they just don't know if it works or if that person who's results are improving would have improved anyway.

[Hidden in reply to Debbiem40]

But Debbiem40, it is the only thing that we can take with having PBC otherwise I am sure that some of us would fair worse once diagnosed if we have certain symptons.

I was reluctant to take urso back in Dec 2010 when prescribed after being informed I have PBC but for me I thought it might just deal with the itching that I had throughout 2010 that was 24/7 and just awful.

Yes urso has altered my LFTs and GGT over time but at the same time it has also altered the frequency of the itch for me and I only tend to really know I have it in the evenings. I couldn't say if I stopped taking urso now would my LFTs and GGT start to rise again or would the itch start back in the severity it used to be but I continue to take it because if it means I am gaining more time, then I choose to enjoy it more.

With certain bugs, diseases, etc out there, meningitis for one that you have mentioned, I think it is more than likely that some would recover with a medication, others might not be so lucky but then again I'd argue that everyone is different and at the same time everyone has certain bodily weaknesses that vary from one person to the next so that would be quite true.

A lot of people uptake the 'flu vaccination for one but if there was some 'flu epidemic it could be said that not everyone who had the vaccination would overcome it just as much as people who did not uptake the vaccine where some would ride it through, others not so lucky.

[Debbiem40 in reply to Hidden]

Well I'm only saying what a leading Professor in the Liver medicine told me! Its a fact that if you didn't treat a person with Meningitis he would die, there is not point using ifs and buts.

I know that URSO helps a lot of people's symptoms BUT he did say they don't really know if will help long term or not. I was diagnosed with PBC nearly 13 years ago and I've been fine all this time without it. Just saying.

[Hidden in reply to Debbiem40]

Hiya again Debbiem40.

I understand your posting well.

For me I have to say I'm not interested in finding out about PBC in the future as regards to how it might go for myself, I rather would deal with things as and when. I decided long since (I was diagnosed Dec 2010) that I'd not dwell on what could be when that what could be might never occur.

I agree that urso is not the answer in PBC. My view here is that the way forward would be to deal with the antibodies that we apparently produce that cause PBC to keep on chugging along. (I had a high titre of the AMAs - anti mitocondria antibodies - that gave diagnosis of PBC along with itching and at the time fatigue plus abnormal bloods.) I know for a lot of us daignosed with PBC now if there was a way to eradicate PBC we'd still be left with what damage had been done but at the end of the day we'd more than likely not continue to progress if that is how it was to be with us.

I am sorry to say that even though I like to know what's going on with myself and why certain tests are requested or what my bloods are (they are Top Secret at my GP surgery, I struggle to get print-outs each time as I like to look through the figures myself and though I no longer bother overly-much I still would like an heads up), some doctors seem to go overboard and in certain instances give out what is to me negative comments.

[Juamcc in reply to Debbiem40]

I researched Urso and discovered some people with pbc were given urso some a placebo. After a time the research was s topped because the people on urso were doing so well it would be immoral to continue to use the placebo!

[BethRL in reply to Debbiem40]

Hi. No meds? Have you checked enzymes level over the years? Biopsy since diagnosed?

I was just diagnosed. One Urso pill taken. I have dizziness, headache, did not sleep well.

Curious how your doing without?

[Kevin733]

Urso is shown safe and effective for the treatment of PBC. The analogy to meningitis is not apt because that's an acute, rather than chronic condition. With chronic conditions, the "proof" comes from long-term statistical analysis, rather than short-term effects.

To answer your question:

1. You would likely not notice any immediate effects. PBC moves very slowly, even when untreated.

2. Yes, liver enzymes and transminoase levels would elevate, within 6-12 months.

I know this is informal, but if you look at blogs where people self-report their enzyme levels and experiment with natural foods/GF diets in lieu of Urso, you can see a clear correlation between enzyme levels rising and Urso tapering. This happens even when the Urso dose is lowered, not just when it's stopped completely.

[Debbiem40 in reply to Kevin733]

Well I'm only saying what a leading Professor in the Liver medicine told me! Its a fact that if you didn't treat a person with Meningitis he would die, there is not point using ifs and buts. It was HIS analogy.

I know that URSO helps a lot of people's symptoms BUT he did say they don't really know if will help long term or not. I was diagnosed with PBC nearly 13 years ago and I've been fine all this time without it. Just saying.

[Kat44 in reply to Debbiem40]

Hi,

I was wondering if you are still not taking Urso and if so, how are you doing? I'm a bit skeptical of taking it and would like to know more.

[PBCRobert Partner in reply to Kat44]

I am replying here to let you know that I am replying below in the main thread.

[donna01]

I would like to share some info with you: I was on urso for 5 months, then stopped it for 6 weeks. The reason I stopped it was due to my hair was literally falling out! I was convinced it was the urso. Doctor told me it may have been the PBC. Anyways, I am in the U.S and our side effects do in fact show hair loss as a symptom. My understanding is it is a rare side effect, but if just one person has hair loss in these studies, they list it as a possible side effect. Anyways, my hair is no longer falling out! My enzymes went up just a little, but the 5 months of being on urso brought my levels down to where I was in 2012! Anyways, I am going to go back on it but not 3 times a day as the prescription calls for. I am doing one every other day for now and will slowly move up to 2 a day and see how it goes. Just thought I would share my experience. Hope that helps.. Oh and also, I am asymptomatic, thank God!

[bluetopia86]

I'm actually not on urso myself, I am on prograf and cellcept. My doctors are down at Shands in Gainesville. Great liver team and specialists. I have already had 2 transplants, so that could be why I'm on different medication. My advice for care would be to possibly get in and see Dr. Soldevila or Dr. Morelli. Not sure what would happen if you stop taking the meds suddenly. Probably just like you said about the slowing of the progression, that will stop and it will run its course on its own. The progression of the disease could then mature at a normal or faster rate. Your liver enzymes will elevate more when something is going on in the liver. I'm sure they are high now, so any higher elevated levels could indicate worsening progression of scarring. A number of things could happen from stopping your medication depending on here you stand with where the disease is, itchiness and fatigue are always side effects of pbc.

[mylo2]

I stopped taking Urso after two yrs on it, and bloods worsened, so now back on it and being monitered monthly, Its coming down again, so will stay on it this time, if I were you , I would not chance coming off it. best wishes, Jan (mylo2)

[Jaycee]

Hi There, I stopped Urso about 3 years ago, I couldn't live with the side effects, my LFT'S have been normal since then, but I believe normal LFT's are not an indication the disease is not progressing, but my consultant tells me as long as the tests are normal, it's ok, she dosn't offer me any further tests anyway, and tells me there is no cirhossis??? ( don't know if I have spellled that right), so I don't know what to believe, but anyway, I don't take Urso and don't seem any worse off, but we are all different, what is ok for some isn't ok for others, seek advice, All the best

[PBCRobert Partner]

This came up after three years in the doldrums so it looks like I need to address this.

Every guideline worth its salt recommends taking Urso for PBC. Ideally it should be prescribed at 13-15mg per Kg per day.

Urso is a very successful treatment for PBC. Early intervention plus Urso response leads to normal life expectancy.

Even those who do not fully respond to Urso have a better life expectancy than those without it.

So those without it.

Well, the natural progression of PBC is listed in data as progressing to cirrhosis in 40% of cases within 10 years.

There is also some data out there, for all I need to look at it in more detail, that alludes to prolonged stopping of Urso then going back on leads to a lesser response second time.

The recommendations within guidelines say Urso should be a life-long treatment.

For those who are having issue with clinicians re Urso, join the Foundation (for free) then print off the materials we have: compendium, lay guidelines, etc.

This is potentially too serious not to know the situation.

Robert.