Diarrhoea

[Newsroom]

I have had diarrhoea for the last couple of weeks which I believe is due to Urso, I take the Urofalk capsules , supposed to take four 250mg per day. Cut down to three to see if that helps, I have now decided to stop Urso completely for two weeks to be sure it really is the Urso. Has anyone else had this problem and how do you handle it. Also do you think I should change to the tablet form of Urso and if so which manufacturer would you recommend. Is there anywhere I could get dietary advice. Very anxious with this.

[Jaycee]

Hi There, I know exactly how you feel, it happened to me as well, I stopped taking the Urso altogether about 18 months ago, I get my blood test every 3/4 months, and my LFT'S are still normal, I spoke to my consultant and she is in agreement, I also had a CT scan and my bile ducts are also normal,I know I'm only stage 1 so maybe that makes a difference, so I urge you you to discuss this with your consultant before you do anything, we are all different, but I will say, I've not had the dreaded symptom since, you will also find all the dietary advice you need on this wonderful site,, Good luck and stay well

[Newsroom in reply to Jaycee]

Hello Jaycee,

Thank you for your reply ,I am also stage I and only just, I was diagnosed via liver biopsy . Only had the biopsy as apart from raised LFTs ( which were discovered through routine blood test for under active thyroid ) I had no symptoms at all. I have not taken Urso for two days and am already starting to feel better, I am going to give myself two weeks Urso free and then start back on just two capsules a day, this was fine in the beginning it was only when consultant asked me to increase to 4 x250mg per day that my problems started. I only have bloods done yearly so I will see my GP in two weeks and see what he says! This site is so good I don't know anyone else who has PBC and it is great to have information and advice/ experience from fellow PBCers.

[Hidden]

Hello Newsroom.

Unfortunately it seems that diarrhoea can be a common side-effect of taking urso. I know it states this on the info leaflet I have with mine and also prevous other manufacturing companies of urso too. I have myself have never experienced diarrhoea with taking urso. I went the opposite way in the beginning and have to say that I still go through bouts if I don't have an adequate fluid and fibre intake I can become constipated which I never was prior to taking urso in Dec 2010.

I started our on 300mg tablets (2 x 300mgs daily making 600mgs) of which they were brand Urdox 300mgs. I had heartburn, bloating and then constipation on originally starting urso. The first 2 side-effects vanished within 3 months. I continued taking urso after my first LFTs were done about 7/8wks after starting and they were greatly improved so I continued. Now later 2012 I had heartburn again and it went on. I noticed my tablets had lost the brand name Urdox off the packaging but the tablets looked the same. I found out that they were the generic version, same pharma. The effects were temporary but my body certainly picked up on what must have been a slight difference but nothing untoward.

Sept 2013 I had to have 150mg due to the 300mgs being withdrawn. I suffered side-effects once again and they were from generics. The side-effects of heartburn persisted long beyond the original urso so much so I have now got a brand name (Destolit) of which I have no problems at all. Constipation can still be a minor problem at times though.

Now I do think that for some with side-effects it can be the fillers as opposed to the actual component which in our case is the ursodeoxycholic acid. But I think with diarrhoea it could be due to the urso itself. My theory is that for some who suffer diarrhoea given it does state on one of the patient lieaflets I have read on urso that an overdose of urso for someone like us with PBC wouldn't actually do much harm, it would cause diarrhoea as that is how our body would get rid of the excess urso, this could be the cause. Maybe the dose is a tad too high and that causes it but I'm not a doctor but it would be something I'd pose to one if I was experiencing this sympton.

Have you at all tried just reducing your dose of urso temporarily to see if it makes any difference to you at all. If the LFTs are doing well on the given urso then it would be advisable to ask the medical professional here. I do seem to recall that some on this site have been taking some other medication to alleviate diarrhoea whilst taking urso but I cannot give any opinion there not being in that situation.

I was never informed to change anything dietary when I was diagnosed and I did ask the hospital consultant. His words were pre-diagnosis (at first consult he knowing I had some liver problem) and also following when I asked again, "The liver loves calories". He knew I was not much of an alcohol drinker as I had stated over the months having blood tests, etc that I wasn't drinking. I never had even a teaspoon of alcohol following my first abnormal LFTs in early 2010 and haven't bothered since. What you were never that fussed about prior, to me I'm not bothered now. I chose to abstain totally from even the odd glass of something in 2010 and that is how I will go on.

I try to eat a low-fat diet with not much salt. I avoid MSG and other things in certain foods that I am unsure about. I try to eat a varied range of fresh fruit and vegetables and meals without much of a process to prepare (ie steamed fish with fresh boiled potatoes and steamed vegetables). I go for quality as opposed to quantity and I've been doing quite well since the following year after diagnose when to me the urso was starting to bed in and my body was in the process of regaining some normality again. I do think though from time to time it is good to have something that you'd not normally eat. Last wk I made my own pizzas with a good quality crumbly cheese, less of it on the pizza, more fresh vegetables and some plain cooked fresh chicken.

I switch to red tea after the evening meal as it is caffeine free. I only have 2 coffees a day as coffee is supposed to be actually good for a damaged liver. All in all I go with how I feel in myself. I still itch but I'm still doing well and I'll go for that.

[Newsroom in reply to Hidden]

Hello Peridot, thank you for your reply, I have not taken any Urso for two days and already am feeling a little better. I think you may be right that although the dosage is right for my body weight it's to high for my body to cope with. As I have been diagnosed ( via biopsy) as barely stage 1, I am going to give myself two free weeks and start again on 2 x 250mg per day, I was ok with this dosage but consultant said to try to get back to 4x 250mg per day. Diet wise I think we eat very healthily, really don't have much processed foods at all. I do have a couple of glasses of wine a week as consultant said would make no difference ! But have cut back big time on this as well. It is so good to have this site I don't know anyone else who has PBC , my husband is very supportive but does not really understand how I feel.

[Hidden in reply to Newsroom]

Hello again Newsroom.

My urso was set at 10mgs per kg body weight back in Dec 2010. The GP took my weight and rounded it off to 60kgs getting the 600mgs urso daily. I am in reality I am actually 4kgs less than the 60. I've remained on this dosage since Dec 2010.

Me too my husband is supportive but though someone can try to understand certain things about this PBC, it is very difficult to really explain the itch for eg. The fact that you start feeling prickly later in the day and that as soon as you lie down later at night to sleep you start feeling it rise to the full blown itch. I do think here only another fellow itcher would really understand exactly what it is to feel. I have found it hard to describe and explained a few different ways but it still comes down to the fact that unless you have it you don't really know.

I've never had a biopsy, no desire to ever have one if it was ever mentioned (I was diagnosed via the AMAs and itching and at the time fatigue plus abnormal bloods) so I haven't a clue at what stage a medic would put me at but I somehow think it isn't anything bad as yet.

[liver-bird]

Hi Newsroom - I too get bouts of diarrhoea which may be due to Urso - my Consultant suggested reducing the dosage when I have the problem. However, I am reluctant to do that because my LFTs are responding well to the Urso. Also Robert of PBC Foundation said that when the Urso is working well and pushing bile acid through the liver as it is designed to do, this can also cause diarrhoea because the only place it can go is the bowel. I reduce fruit in my diet when I have the diarrhoea and this seems to help. I think you should discuss with your doctor before stopping Urso altogether. Do let us know how you get on. Good luck

[Hidden]

I think that anyone taking urso can be prone to certain tummy and bowel upsets due to the fact that in our natural state minus our PBC with compromised biliary system, bile comes from the gallbladder where it is generally stored and an acid wouldn't be directly into our stomach to contribute to the digestion process. I feel this is why I suffered in the early days and also with urso tablet changes from diff pharmaceuticals, simply because urso is a type of acid.

[cazz22]

Hi I cannot tolerate full dose urso (I only take 450mg I should be on a thousand)I cannot take capsules but find I'm better on the white tablets(they also do liquid version)however every so often I have a break and don't take any just to feel 'normal'.i spoke to colleen at the foundation and she thought some urso was better than none.my bloods have dropped but that is no indication as to the progression of Pbc.i love fruit but cut back when things get bad.i eat an healthy diet but find the odd treat of say fish and chips or chocolate really punishes me and again that can he down to Pbc.i hope you find a compromise with it soon

[mandilou]

Speak with your Dr before stopping!its an important medication,maybe they'll let u take something to stop diahorea instead,I've heard it can be a common side effect but I couldn't live without the urso as the itch I suffer is unbearable

Hope you can resolve this issue to stay medicated