I've just started on urso, I've taken it fo... - PBC Foundation

PBC Foundation

9,384 members7,989 posts

I've just started on urso, I've taken it for 1 week now , and I feel terrible. Heart burn, stomach cramps, diarrhea, flatulance

Lucylongstockings profile image
17 Replies

My dr. Didn't really explain anything about side effects, and she suggested I take the whole dose in one go not build up gradually. Thank goodness the pharmacist knew better. I haven t buit up to the full dose yet . I'm taking my tablets during my meals to help with the heart burn. I'm eating loads of rubbish to try and keep the burning at bay. Any suggestions? I don't want to stop. are there different types of tablet? Are there coated ones that don't give heart burn as much? I take ursofalk 250 hard caspules my dose is 2 tablets twice a day, but I'm taking 1 3 times a day at the moment

Written by
Lucylongstockings profile image
Lucylongstockings
To view profiles and participate in discussions please or .
Read more about...
17 Replies

This happened to me and my consultant told me to just take one a day to start and build up gradually, I now take 3 ursofaulk caps all together with my evening meal ( someone on here told me to try the 3 with my evening meal ) and I have had no problems at all since.

I think a lot have problems at first,

CheshireEm profile image
CheshireEm

I was exactly the same for the first 4 weeks and completely sympathise as it's not nice at all. I did find that the more healthy food choices I made then the less diarrhoea and wind problems I had. Between that and I assume my body getting used to the drug then it did mostly fade away. 5 months on from starting on Ursofalk I still find that high fat foods (particularly pastry) cause stomach pain and frankly makes an exit as quick as possible! But keep with it and keep talking to your consultant as the general finding is that it does settle down. Good luck x

cazz22 profile image
cazz22

Hi.i cannot take the capsules for all the reasons you have mentioned I am now on tablets which are better for me.looks like I allergic to the fillers in capsules.they also do suspension(liquid)don't struggle on for ever.give it a couple of months and then try tabs/liquid.good luck

Hello Lucylongstuckings.

I'm not on Ursofalk as I got 300mgs (that were recalled last year so now doubling up on 150mgs of a different manufacturer). I was prescribed 600mgs per day.

I found in the beginning (Dec 2010) when I started to take urso I was feeling bloated and suffered with heartburn for awhile. It did go away. I was originally going to get the tablets to take 4 times per day but told the doctor I wouldn't take them as that so was suggested twice a day.

Had I not have had a repeat blood test about 8wks after starting urso and got good result I might have stopped taking them as heartburn at night was just dreadful. But the symptons did vanish within 3 months.

I seemed to be all fine afterwards but then later in 2012 noticed the usual 300mgs had lost the brand off the box and reckon I was given generics. I went through temporary side-effects once again which prompted me to check the tablets. That subsided but then summer last year after a 300mgs recall, had to be prescribed 150mgs. I once again suffered with bad heartburn at night with the Ursogal. I found out that there was another urso in 150mgs Destolit so went to a different chemist and asked for blister packs again (the Ursogal came loose in brown bottles). Since switching to Destolit 10wks ago I've been perfectly fine.

Urso is said to be well-tolerated but I think it isn't the actual ingredient itself, it is the fillers that are used. I checked out all the additional additives in the tablets I have had and they can tend to be different. (For eg there is talc in one.)

There is actually no set rules of taking urso, depends when you feel it is best. I have experimented with mine in the last 3yrs and know that taking mine all at once of a morning as I did read in a Bear Facts magazine doesn't work. I itch at night but I was finding for the few days I did take all at once with breakfast that I was itching a couple hours later and didn't feel normal to me. I think taking all at once for some of us could be a case of giving the system an overload of the urso.

An idea would be to perhaps take your tablets at spaced intervals for a few weeks and if you can cut them in half as all mine have been scored (all mine have been the chalky white tablets), take them like that and then gradually build up to perhaps twice a day. I've found for me it works best taking one dose at breakfast, another at teatime. I've never been brave enough to take all the urso at night-time given I felt bad taking all in one go at morning.

In the early days I took urso I used to take the 2nd dose early evening after tea and then moved it to teatime. I would take it with a dry biscuit (the English Rich Tea) as it is best taken with food or just after eating.

Hope you can rebalance yourself with the urso. I found it irritating at the start of taking urso as I'd never been one for taking any form of medication and was so gutted when I was informed urso is for life. Now I just get on with taking the tablets as they are helping with the bloods and the itch is not as prevalent as it was in the early days before diagnosis.

susanburgess profile image
susanburgess

I Take 4 urso tablets every morning after my breakfast no problems, I have done this for over10 years so far I am ok.

Val02 profile image
Val02

URSO is known to cause these problems for some people, especially to start with.

When I started I was given 300mg for the first month, then up to 600mg after that and I had no real problems taking it. Saying that, I was on omeprazole already as I had been suffering with reflux for about a year before my diagnosis so that might have helped.

I think build up slowly as 1000mg is a lot!

Hotshot profile image
Hotshot

Hello Lucy I have been on two tablets 3 times a day, I also take 1 Omeprazole to help the hart burn and tummy pain, I also suffer from the symptoms you have but recently tried a yakult before I go to bed because this was my worst time when layer down, this has helped me a lot, I also find if I eat a big meal this upsets me, it is tial and error to try and make Urso work best for you. Give the yakult a try and change the time you take your tablets, just jiggle it Round and see if it helps. Good luck Hotshot

carpman32 profile image
carpman32

Hi

I take ursodeoxycholic acid six by 150mg uncoated each night all in one go, and I take them at 9pm with orange juice, and have not had any side effects at all I have been on these for the last 3 years, so hope this helps.

carpman

in reply to carpman32

Hello carpman32.

Although I have experimented with the urso since starting it Dec 2010 I haven't yet tried taking it all in one go for the fear of side-effects as I did suffer from temporary ones (3mths) back at the start.

I did try taking the whole lot (600mgs daily) with breakfast for a few days later 2013 but I found within hours I was itching badly, something I never do normally during the day. (Night-time itcher.)

I know when I originally started on urso I did take one at breakfast and then one around 9p.m. at night with a couple dry biscuits but due to the heartburn at night after starting urso, I thought perhaps that was the cause so switched to the 2nd tablet with or just following the evening meal around 6p.m.

Can I ask how your results have been with taking the urso at night? I seem to think that perhaps the results although they can start coming down, perhaps they may come down that bit more by taking the urso in a certain way?

operatic profile image
operatic

I felt like you awful at first but then it settled down and I've felt marvellous for couple of years now. Do you take anything similar to Lamsoprazole i feel good with it but burning heartburn etc without?

operatic profile image
operatic

My urso look the same as paracetamol tablets and i take 3 with evening meal but did need to gradually build up to this in the first place. I need indigestion tablets such as lamsoprazole every morning or i burn and choke with acid reflux. Yogurt drinks are very soothing too and helps natural bacteria in gut.

Oidra profile image
Oidra

I take 3x250 Ursofalk after breakfast with no ill effects. Have done for 13 years.

Good luck in finding the right time for you.

mumofthree profile image
mumofthree

I was prescribed two URSO 250mg hard capsules 3 times a day. My consultant warned me before hand that I may get diarrhoea at first and if it did happen to cut down to 1 capsule 3 times a day and gradually build them up to the full dose over a month by adding 1 extra capsule a week. After about a year my consultant told me I could take them all at once because I admitted I would miss the odd dose here and there as I would just forget to take them, but taking them all together gave me diarrhoea. I now take 3 capsules with my breakfast and 3 at tea time (around 6pm). I have found that I have to make sure I take the capsules with plenty of water because they do have the tendency to stick in the throat and burst and then the powder comes back up into the mouth and out through the nose...not nice!! I take the omeprazole because of the reflux and heartburn which used to plague me at night time. I was told to take the omeprazole before going to bed which did not help but my pharmacist suggested I take it at tea time and this has done the trick for me.

I try and avoid fatty foods and anything with pastry because unfortunately they seem to go straight through me. I also avoid bread because I found it caused me to get painful bloating and sometimes spicy foods upset my tummy too. Eating smaller meals also helps.

Its a bit of trial and error at first working out what agrees with you and what does not. I kept a diary and gradually worked out what foods were upsetting me and how best to take my tablets. It may take a little time to adjust but you will get there eventually.

loriejw profile image
loriejw

I don't know it my experience will help you but here goes. I started on the tablets and at the time there wasn't a generic yet. now there are a few different manufacturers. I take 500 twice a day - total 1000. I was not aware but I had two 1 inch tears in my esophagus (hiatal hernia) which had to be repaired. That helped with the heartburn. I found when I don't have some yogurt or toast prior to taking my dose or at least within a short period of time, i will get GI upset. I added a probiotic but remember to have a low fat diet, increase your fiber and watch your protein intake. I use the guideline of 40-60 mg depending on your body weight. Exercise has been a big help as well. I have a high protein Ensure most days to make sure I get my right amount. It took about two years to get my labs back to normal, but right and for the past 2 years I have been stable. I also lost about 80 lbs reversing diabetes for now. Everything you can do to improve your overall health will only help you with your PBC. Depression is not an option. If you feel helpless, get help. I know how hard it is - I was symptomatic with pain in the side, itching and jaundice. It took me 5 years and 3 different operations before i was diagnosed.

Anne123_45 profile image
Anne123_45

All at night right before bed.. No bother.. Bit of heartburn at the start now on them 7 months.. Taking at night helps them target problem with no disturbing influence diluting the affect.. To put into context my alk phosphate was over 1100 in June it's now 105. I've made no drastic life changes except for alcohol within the recommended guidelines now.. I used to enjoy social drinking a lot more before all this :-)

Misty1 profile image
Misty1

I was on two a day but due to the diarrhea and itchiness my consultant took me down to one a day inthe evening, this did reduce the problem a bit.

enalynot profile image
enalynot

I take 1000mg at my evening meal stomach cramps then flatulent the wife thinks I do it on purpose I use to be able to hang on for the toilet before urso but now its about half an hour then I have to go

You may also like...

Primary biliary cirrhosis

etc. GP suggested halving the dose and build up gradually. today I have only taken 250 dose and now...

Questran Light, (cholestyramine) and other meds - timings of taking advice.

bless his heart) He offered me a one a day tablet but I am worried a high one of dose may give...

Difficulty swallowing tablets

finding it really hard to keep down the urso tablets. I take them with lots of water but they seem...

Urso prices skyrocketing in US

deductible, just the pharmacy one, which is 3500.00. I checked and the 250mg tablet is cheaper,...

Malaria tablets with pbc

Hi I'm off to Goa in November , and I'm unsure if I can take malaria tablets or not, I tried last...