Anyone ever come off of Urso??

[Tumbleweed41]

I have been on Ursodiol for 4 1/2y and would dearly love to get off of it. Have seen bits and pieces on here about some of you not taking it. Have any of you ever taken it for more than a year or so and then weaned off?

[Gioielli]

Have been on it for over 2 years and have no desire to come off. Feel so much better since taking this medication.

[Hidden]

Hello Tumbleweed41.

I have been taking urso now since Dec 2010 and though I have had periods in the early days of it where I didn't feel so good knowing that urso is apparently for the rest of your life, I skipped odd days, can't say I felt any different!

I went by the results of the bloods after taking it and in the beginning the lft's were decreasing so that compelled me to plough on.

I got notso good results Oct 2011 and also March 2012 but the ones I had recently (May) showed them to be as good and some slightly better than after being on urso for 6mths originally so for me they must be doing something although I still think that watching dietary intake has had something to do with it all too.

I think you could get by without taking urso and for me the itch hasn't exactly subsided as much as I thought I was led to believe by the consultant in the beginning (maybe it's that thing of itching being a possible side-effect of urso and that's why there isn't much of a distinctive difference?

I see urso as more like a supplement than an actual drug as it adds bile acid for us. I had a few minor side-effects in the first few mths of taking urso but that vanished so I can't say I notice I'm actually taking urso (it's more a case of remembering to take it for me!).

For me whilst the lft's are pretty much stable I shall continue, I'll probably reconsider if they are ever not having any response.

On another note I don't think you'd need to actually wean yourself off urso, you could just cease taking it.

[Lockness]

Is there a specific reason that you want to come off of it? I was given diagnosis of PBC in Feb this year and started taking Urso soon after. I feel so much better (people also commenting on how much better I look) and my LFT levels are almost back to normal. I will definately stay on it unless, like peridot, I stop responding to it. I hope you make the right decision for you.

[Hidden]

I have stopped taking it but I would not advise anyone else to, It was making me feel ill, worse than I allready do and I will see what my bloods say next time, I just want to feel normal, well as normal as I can for a while without side effects from drugs, I will let you all know how I get on when I see the gastro as we don't have a liver specialist in North Wales.

[Hidden in reply to Hidden]

Hello Linda.

You mention you have stopped taking urso but that you think it was giving you side-effects.

Out of interest, was it just urso you were taking and nothing else drugswise?

If you weren't just on urso, have you thought of perhaps just taking urso and seeing what happens?

I don't like taking medications myself, never have BUT I think at present, I've no inclinations to come off the urso as I have seen a difference myself with taking it and I'd only consider as said prior to an earlier posting on this question, to withdraw from taking it if I had a run of increasing lft's but for me, at present, things are looking good even tho' doubt the itch will ever vanish at the intervals I have it, I can at present get by.

[Jaycee]

Hi. I have been on Urso for about 2 years now, since I started taking it I have been "unwell" nothing I could put my finger on, just unwell, then I had a really bad 2 months of terrible stomach problems, I stopped all my tablets and within 48 hours I felt so much better, and when I look back I realised it was the Urso making me unwell, I'm lucky, I dont have any symptoms of PBC and now, I feel so well in so many different ways, I have my brain back, my hair is beginning to look better as is my skin, I can't say for definate it was the Urso but nothing will persuade me to go back to them, I have my life back,

[Hidden in reply to Jaycee]

Thats what I want my life back!!!! and I think the same as you since I went on it I have felt like the pits, I came off it once before and felt great but got frightened and went back on it why I don't know, other people I think. I do know that I cannot take a pain killer or any other pills at all since I went on urso as they all react when they didn't before.

I took tramadol and had halucinations and ended up in bed all the time, paracetamol now make me ill , codine make me ill, osteoporosis drugs make me ill, piriton, follic acid makes me ill,calcium and vit d make me il, ibruprofen makes me ill. I think they are all reacting with the urso espesially as paracetamol and codien and ibrupropfen were never a problem before. I am going to give it two more days and take a paracetamol and see how I go as I am in constant pain.

[Jaycee in reply to Hidden]

I know exactly how you feel, I was not prepared to live like that anymore, I know I am taking a chance but I won't go on being ill all the time, I'm taking control, I don't know what my consultant will say though,but I'm not going back on them, I don't see him till August but will let you all know how I go, All the best to you and I hope you feel better soon, let me know how you go.

[member1 in reply to Hidden]

Have you tried taking the paracetamol again and was there any reaction. Are you now off the urso tablets?

[Hidden in reply to member1]

Hi Member, I have now stopped taking the urso but havent had the nerve to take a painkiller yet, but I will :o)

[Hidden in reply to Hidden]

Himember, well I tried a 400mg ibruprofen today and all was well, no side effects at all and reduced my pain in some joints, so thats 1 to painkillers and 0 to urso at the moment, tomorrow I will try the paracetamol tomorrow and let you know.

[Hidden]

Hi peridot, I don't take any other drugs whatsover, not even a paracetamol

[Hidden]

Will do probably get a telling off but I can shout louder, I haven't had my next appointment through yet but It sould be about the same time as yours.

Take care XX Linda

[Tumbleweed41]

Thank you all for your comments and opinions. That's what I like about this forum. -

The reason I asked the question is:

1. I detest taking any more pills/drugs than absolutely necessary. Fewer is better as far as I am concerned. -

2. I have been having abdominal problems + diarhea for several months now and all my Gastro/Hep. did was put me on some more pills. -

3. As I have mentioned before, I am taking 4,000mg/day of Milk Thistle and have proven that, for me, it helps to keep my numbers down.

4. And - as Jaycee and Lindaclark said "I want my life back" and if part of that is getting off the Urso, then guess what!! -

I understand that I have to stay on the Azathioprine. I have another "drug" that I will be on forever, also, that is for my heart. Joy joy. - So be it.

Sooooo - I guess it is really up to me to see if I can stop the Urso. I think that I will reduce it gradually tho', being I have been on it for nearly 5 years. Since my Urso is 900mg in 3-300mg capusles, I will probably reduce to 2 caps for 2wks, then 1cap for 2wks and then whoohoo!! - Hopefully that will make things better.

I know that being at 85% on my PBC (stage 3) I am taking a chance but if I can't take charge of my own life, why have it. - I want quality, not quantity.

Ya'll stay as healthy and upbeat as you can. We can do this. -

Geri

[kosy2 in reply to Tumbleweed41]

What do you mean when you say "I know that being at 85% on my PBC (stage 3)? In all my research I have never read anything about %'s.

[Tumbleweed41 in reply to kosy2]

My diagnosing Dr. is the one that said that I was at 85% when I asked him how serious this was (I knew nothing about it at that time). I guess I assumed that he meant the cirrhosis. The orginal wording for the diagnosis was "Auto Immune Hepatitus with Destructive Non-Suppurative Cholangitis." Now ya'll know as much as I do. lol

I'm hoping that during the surgery tomorrow, the surgeon can "see" what is what. (?)

[Tumbleweed41 in reply to Tumbleweed41]

Kosy - I'm glad that you asked the question - it made me go look again.

OK - the diagnosis was "Chronic Non-Suppurative Destructive Cholangitis". People that have this are usually AMA-negative and ANA-positive with high titers. It is another form of PBC. I am/was AMA-negative and very high ANA-positive, as well as my LFT's being high. I don't have any idea what my ANA numbers are now. It seems all they test are the Alk.Phos, Alt, Ast, WBC and RBC.

[kosy2 in reply to Tumbleweed41]

"Chronic Non-Suppurative Destructive Cholangitis" is a more accurate term to discribe what is going on inside the liver.

Cirrhosis means scarring, what happens after the damage is done. That damage can be cause by a number of things.....medication, alcoholism, the destruction of bile ducts.

Some doctors would like to drop the term PBC in favor of "Chronic Non-Suppurative Destructive Cholangitis" however it has never caught on. So, "Chronic Non-Suppurative Destructive Cholangitis" is the same as Primiary Biliary Cirrhosis (PBC).

Not sure the above statement is correct when you say,"People that have this are usually AMA-negative and ANA-positive with high titers. " They are AMA+ 95% of the time, leaving 5% of People with PBC AMA-.

The ANA+ has to do with AIH.

Very confusing, I know.

[kosy2 in reply to kosy2]

P.S. If my brain has not failed me again, you are having your GB removed tomarrow. Sending BIG hugs and a ton of prayers. Let us know how you are getting on when you can.

[Hidden]

Hello again everyone.

Yes it is up to ourselves with regards to urso.

There's no guarantee by taking urso it will slow down progression of PBC but there is that chance it will as with pharmaceuticals, they work for some, not others.

I know I don't like the thought of being reliant on urso for perhaps rest of my life and I'll never understand why in a few months prior to having the AMA test in late 2010 my bloods actually started to decrease as I wasn't prescribed urso until after the AMA test results were through.

Maybe one day it will be known what we can avoid/take as in dietary/lifestyle to help stave off the progression of PBC without the urso as I'm still certain these things are a better way.

I was recently reading about the 'poly pharmacy' by a junior doctor. (A national newspaper I read it.) This article described a case of a retired lady who couldn't sleep at night and ultimately went on a sleeping pill. Within a certain amount of time she was on 7 pills a day and this junior doctor declined all the pills as when he checked up on them all, they had all been prescribed to combat some side-effect of another and many of the side-effects this lady started to suffer were all stemmed from the sleeping pill she took i the beginning!

I know I do go through periods of having itching in the night but at present I'm rather reluctant to get a prescription for prob Questran which would then be another drug and then maybe I'd end up on something else to combat some side-effect of this or maybe it would clash with the urso.

[Tumbleweed41]

It seems that we are in a vicious circle, does it not?? -:((

[EKHM]

Hi, i have been taking urso for nearly 8 yrs, and it has kept me stable, i had a lot of problems to begin with, it took me a long time to feel well again. But i persevered and i started to feel better eventually.

[bridgetthemidget]

My prognosis at the time of diagnosis was 6-8yrs to end stage. I have been taking urso since 98. My LFTS are nearly normal, so I am more than happy to continue with urso.Again, like others on this site, I hated taking medication of any sort, but I got to the point that I was willing to do anything to be free of pain and have some energy.I am at present on urso,hydroxychloroquine, azathioprine,prednisolone and calcichew. Yes, I do rattle!

[littlemo]

HiTumbleweed41 I came off the urso only once in the last 10years and this was in Aug 2006 when I discovered I was pregnant ,my consultant took me off it because of the pregnancy. I felt absolutely fabulous for the first time in 4yrs since I was diagnosed with pbc in April 2002 having suffered the symptoms for one year prior to diagnosis. HOWEVER in November 2006 I began to become unwell and in the Jan 2007 my liver was failing badly and I was almost put on the transplant list urgently. My blood was not clotting and my alk phos and bilirubin were very high. To cut a long story short I was put back on the urso as the dr.s felt it was safe to do so as I was then in my 2nd, almost 3rd trimester of pregnancy. Thankfully my lfts stabilised though they have never been normal since taking pbc. I felt that my episode of liver failure was due to having been taken off the urso but my consultant felt it was more to do with the pregnancy and thus has advised me against having any more children but also i sneakily observed in my notes one day at apt that he had written to my gp that I must never be reduced or taken off the urso without his consent! So that makes makes me wonder! So if I were you I would discuss it with your consultant that way your bloods can be closely monitored to see what effect coming off it is having on you. Just for the record I also hate taking medication but think it's best to follow dr's advice rather than risk possibly your life if the urso is actually keeping your condition stable. Hope that helps take care

[mulberry]

Hi Tumbleweed41, I was taken off URSO in 2004 and put back on it in 2010 as my specialist thought it was not helping at all. I was put back on it due to new research about the drug. It is

beneficial to take it. My blood tests have improved due to taking URSO. Keep well and happy. mulberry x

[suzywong]

I only took Urdsofalk for about 2 weeks they were making feel sick so my GP took me off of them

[Tumbleweed41]

Mulberry -

I think, tho' don't know for sure, that your timing was when they changed the formula from the

"real urso" to the product that they have now. The "real urso" (bear poo) is why I would not take it originally in about 2005 or '06. - I started taking it in '07.

Suzywong -

Sorry that it made you more ill. Some of us just can't take just any medication. We are all so different, just as with the symptoms of this disease. What do they have you taking in place of the Urso??

[Hidden]

I am a firm believer in diet and nutrition. Closely monitoring my fat, sodium, carb, protein and caloric intake percentages has resulted in me feeling good enough to start going to the gym again. I have lost 5lbs of the 20lbs the Doctor said I should lose.,I am taking Urso and Milk Thistle and a multi-vitamin. I also know that the mind can heal, so I do a daily healing meditation focusing my intention on being healthy. I intend to create a life of radiant health and beauty, I intend to focus on that which is life giving and positive ,are just two of the intentions repeated in my mind from this guided meditation by Kelly Howell. For me, not focusing and making the PBC my identity and focusing on healing is the only way to return to how I remember being long before this diagnosis four months ago resulted from changes in how my body was functioning. I thought my tiredness was from being overweight and the aches and pains weren't all that bad. My hair was falling out more than I remembered.and my skin seemed a little different.but I had no other symptoms other than the occasional episode of indigestion. I am in my mid sixties and look forward to a long and vital life. Y'all are invited to my birthday celebration when I reach 100. As Mike Dooley of TUT says, " Thoughts become things, so choose the good ones."

[Tumbleweed41 in reply to Hidden]

You are one of the few others that I have seen that is taking Milk Thistle. May I ask how many mg you are taking daily?? I am taking 2000mg, twice a day, and have been for about 3 yrs now, I think. - I proved to myself, don't know if the Dr. accepted it or not, that the MT helps keep my numbers down. Neither my Gastro nor my PC have tried to discourage me from taking it. They both know that I prefer the herbs when at all possible. -

[Hidden in reply to Tumbleweed41]

It was my Gastro who told me to take MT in the first place. Nice to know there are Drs out there who think outside of the Pharmaceutical box. I take 175mg three times a day. I am new to the PBC dx and have only been on meds for the past 4 months. I also along with the meds do a daily healing meditation, because I am a firm believer in the power of the mind to heal.

[littlemo]

Hi Tumbleweed 41I was just wondering if u did come of the urso and if so how r u doing off it? R u getting ur bloods monitored since (and if ) u did come off it?