Primary biliary cirrhosis

[Moppit]

I was told I have Primary biliary cirrhosis in June 2015 and prescribed ursofalk 500 twice a day. I am struggling to take the full amount because of the side effects, ie nausea, bloating, etc. GP suggested halving the dose and build up gradually. today I have only taken 250 dose and now have indigestion! What is the best way to take this drug? I read that it is not a good idea to take indigestion tablets as they could interact badly with urso.

[Hidden]

Hello Moppit.

Well given you have only been taking urso a month if that as yet, you might need to give it more time. I had side-effects initially, they lasted for 3 months. (I was diagnosed with PBC Dec 2010 when I was 46.) My side-effects were a bit of tummy bloating, constipation (I never encountered pre-urso) and also heartburn. Bloating and heartburn vanished by the 4th month of taking urso and though I have had odd bouts of constipation since, I just increased certain elements of my diet. I also thought the itching that I started with early 2010 (that led to PBC diagnosis) was wrose in the early days of urso.

I was prescribed 600mgs when I started and I opted for 2 x 300mg tablets. I was offered 4 x 150mgs but I wasn't keen on the fact that I was to take tablets daily and seemingly permanently for PBC so I asked for less doses. (I had to take the 150mgs tablets 2yrs ago as the 300mgs I was taking where withdrawn. But I just take 2 tablets morning with breakfast and the final 2 with evening meal.)

I think it might be preferable taking the tablets in spaced doses initially if you are feeling uncomfortable at the doses you are. But the side-effects should vanish in the very near future. I continued taking mine despite thinking they might not be doing much good with the side-effects at the time and decided to wait until my first bloods (the LFTs - liver function test) was taken about 2 months into starting. Getting a miuch better result that showed a good decrease of the LFTs made me continue taking them.

I have tried various ways of taking urso as there doesn't seem to be a steadfast rule but I think in the early days of urso it might be best taking them as spaced out doses. I'd take the tablet in 2 doses as I think you are on 2 x 250mgs (?) and make sure you have plenty of food with one. I'd go for breakfast and then the evening meal. I sometimes find that I feel a bit of heartburn coming on in the evening so I take my final 2 urso with a drink and dry biscuit about half hour before the evening meal and it seems to be fine for me.

A good tip for heartburn if you do encounter is several hours after your urso take a calcium and Vit D tablet. I do of a rare occasion if I feel I am going to get heartburn a bit more prominent later at night and this seems to do the trick plus I think it is by far better than more additives that are in our UK Rennies for eg and calcium is actually what Rennies are (plus others I have noticed but the calcium and Vit D are cheaper OTC).

Hope the urso starts to settle soon but I think that you do have to give it a good go for a few months as I know I did in the beginning and it did ease off.

[Moppit in reply to Hidden]

Thank you for the useful info, Peridot. I will try calcium for the indigestion as I have it on prescription anyway. I reported to the surgery that I was struggling with the after effects and was told over the phone to stop taking them. I managed to get an appointment for today and saw a different GP to my usual one. He was very helpful and looked up the information I needed to know. He gave me longer than the usual 10 minutes and just talking to someone was really helpful. I came away feeling much happier and will do as he suggests, cutting down to 500 mg a day for a while. I have them in tablet form. I asked about having 250 mg as thought it would be easier to cut the dose in half, but they are capsules so not sure if that's a good idea to change. Got a pill cutter from the chemist so that I can cut the pills in half and have now taken two doses but can feel the pain starting again. I got some herb teas (ginger and peppermint) which are supposed to relieve indigestion. Hope I'm not awake all night with it.

A few weeks ago I'd never heard of PBC and had no symptoms but as soon as I got the diagnosis from the consultant I started getting symptoms. I hope that it is because of the medication and not the disease causing them!

[Hidden in reply to Moppit]

Hello again Moppit. Are your tablets not scored as mine are. I have a time or two experimented in taking mine over the last almost 5yrs and found for me the best way to take. Odd times I feel like I am full of acid (I can't explain this one but odd times I just feel like I am full of urso) I tend to split the final 2 tablets and have one after lunch, the last one with evening meal. Seems to make me feel better and then I return to normal. I do think part of it is the balance of food, particularly fats in the diet that hold some meaning to urso and food. I often feel better some days than others and then I think what I had eaten and think that perhaps I got a good balance between food intake and urso.

Not sure if you are in the UK I do seem to think you can get 250mgs in urso tablets as they are the cheapest to the NHS as opposed to capsule or liquid. I have 150mg denominations unlike what you have been presribed but I have heard on this site that the ones taking the 250mgs or 500mgs are Dr. Falk by brand.

I know when I first started on urso back Dec 2010 I was given Urdox 300mg tablets and continued taking those without any problems following the first 3 months. Then one day I started with same symptons I had in the early days and checked packaging. I noticed that the word had been taken away and it appears that they were generics. I was fine after a short while and no problems. Then come summer 2013 the 300mgs were withdrawn and I was presribed 150mgs that I had to then take 4 tablets to make up 600mgs. I started off on Destolit from one pharmacy and they are branded. Then this pharmacy refused to give me these on prescription as the generics were cheaper to the NHS. I started having bad heartburn and it persisted so much so that I ended up seeing the GP to ask for the branded urso and I've been on that now for 18mths and no problems.

It could be a case that it is the actual manufacturer of your urso that may be causing a problem but at the moment it could be too early to tell.

I have found that I can't really take ginger much these days, that for me does in fact cause heartburn. I try to steer clear of anything acidic if possible, especially come later in the day. I buy licorice herbal tea that I like, just have the odd one (not to be taken in high consumption if one has high blood pressure (I am fine)) and steer clear of any of the fruit ones myself, tend to prefer the floral types.

Peppermint capsules are actually quite good for indigestion. They are also good for flatulence and wind. They do actually help in heartburn as I've tried those too. Got to get a good quality one though.

[cazz22]

Hi.i was exactly like you.it turned out that I was reacting to the filler in the capsule could never take more than 450mg daily.after advice on here I demanded tablets and hey presto no problems except they won't give me more than 450 mg a day(when I should be over1000)cos my bloods are near perfect😡

Good luck learn all you can about Pbc because the medical profession don't seem to know much and then push it all to the back of your mind and live your life x

[Hidden in reply to cazz22]

Hello cazz22.

Yes I too believe that it is the fillers in tablets and capsules that can be the cause of side-effects. I have ntoiced when I was doing a bit of research into urso after the 300mgs were withdrawn 2yrs ago that fillers did vary. I've actually been fine on a brand one but the last one I had with a different pharma in my current 150mgs they caused me heartburn that vanished when I switched tablets.

[Sachin1234]

do u take ur urso with food or not ? if not take urso in full stomach or with a big glass of milk..

[Hidden in reply to Sachin1234]

i believe Sachin1234 that urso should be taken with food. After all we are taking a form of acid that unlike natural bile goes straight into the stomach.

I find as long as food is taken, be it the evening meal or a simple snack early morning then I've had no problems. (I sometimes rise early and think too early for breakfast so have a couple dry biscuits, a cup of tea and then take the first of the urso for the day.)

[Karaliz]

There is no right or wrong way to take Urso... What works best is as individual as we are ! I take the whole lot with a glass of water as I am heading to bed... No problems !!

[alpha3]

Hello Moppitt, take 250mg. Urso three times a day, so just to let you know they are available. I live in the UK

[Pat_H]

I take 1000mg (4 tablets) of Ursofalk a day. When I started off I, too, had a side effect - my itching greatly increased! To help get over this, I dropped down to 1 tablet a day for the first two weeks, then 2 tablets for two weeks and so on, building up to 4 tablets a day, which I now take all together in the evening. The itching dropped back to my pre-Urso itching.

[Moppit in reply to Pat_H]

Thank you Pat-H. I now seem to have overcome the sick feeling by stopping for 3 days, then taking half the dose for 2 days, now up to the full amount spaced throughout the day. The aim is to be able to take the whole dose in the evening. I now have the mild itching that people have reported but it's not too bad at the moment. it seems that you have to overcome each unpleasant side effect as it arises. I'm hoping that once the body gets used to the drug things start to return to "normal".

[Julez1961]

Hi Moppit

When I was first diagnosed I couldn't stomach them at all, it was like constant morning sickness. I tried everything suggested but eventually I became more used to them it did coincide with being put on 40mg of Nexium though.

Try what you think might help there is no right or wrong with PBC.

Good luck

Juliez

[Pat_H]

Hi Moppit

I can't remember where I heard/read this, but from somewhere I gained the idea that Urso should be taken with some form of fatty food. Just by luck, as I'm one of those people who can't take large-sized pills without making a big fuss, I was already taking Urso with natural yoghurt, which I make. So I feel I'm doing the "right thing". Absolutely no idea as to whether or not this is correct, but I do like natural yoghurt and it's another reason to eat it!

[Moppit in reply to Pat_H]

I couldn't agree more. I read that although you should reduce your fat intake you shouldn't cut it out completely. Presumably the extra bile intake needs something to work on and maybe it helps to overcome some of the nasty side effects. I have also started using yoghurt (Greek style) which maybe helps to protect the stomach from all that acid. I could be completely wrong but will try anything that seems to work. Also trying herb teas like peppermint and ginger to counteract indigestion I had a few days ago and that seems to have gone now. Has anyone ever suggested seeing a nutritionist? Although I have a fair idea what I should eat it would be useful to know exactly what's right and wrong!

[CindiA]

I take it on a full stomach, along with all the other meds they've prescribed. I take 1capsule, 3 x a day. Most times I feel a little unsettled & slightly nauseous but usually it goes away. Last night I got out of bed and threw up. It seems to be part of the symptoms.

Good luck,

Cindi