Stomach issues: Hi Just wondering if anyone... - PBC Foundation

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Stomach issues

Casslucy profile image
17 Replies

Hi Just wondering if anyone stopped their Urso for a week to see if it helped with stomach issues. I've been on it now for 2 years and my numbers are all good since last August. They've never been overly high according to my consultant who thinks its a very mild case but I've now been getting different stomach issues like discomfort heartburn bloating and I'm wondering if it's the urso. I thought if I stopped it for a week it would let me see if it is it or not!

Thanks lynn

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Casslucy profile image
Casslucy
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17 Replies
Lilydoll10 profile image
Lilydoll10

I have good blood scores now but have stomach pain and digestion issues but I assumed this was because I may not be able to tolerate fats well as bile ducts are compromised by PBC or maybe because my liver isn’t working as well as it should. As I haven’t had my fibroscan yet or talked in detail to a specialist I don’t know so it would be good to hear from an expert. Thanks for bringing this up.

Casslucy profile image
Casslucy in reply toLilydoll10

Hi Lilydoll10I seem to have had digestive issues the whole time I've been on urso but didn't have any before diagnosed! At the start I had bad nausea and it eventually went away but now it seems to be all indigestion discomfort or heartburn so I don't know if it's the tablet or now maybe reflux has appeared. I'm supposed to take 1000 mg but seem to get stuck at 750. When I try to go up I end up feeling bad so I go back down again lol! The consultant knows this and says not to panic to just keep trying

I think I'll maybe stop them for a week and see if I improve so I at least know if it's the urso causing it failing that I'll have to speak to the doctor! I've had this nearly 3 years now and don't fancy feeling like this forever!!

roseter profile image
roseter

Hi,I have had very severe stomach issues for many years. I was taken off urso for over a year. It made no difference! My numbers all were worse so I went back on. I think it's down to the liver and bile ducts deteriorating. Hope you get some answers.

Rosie

Casslucy profile image
Casslucy in reply toroseter

Hi RoseterHopefully not deteriorating too much after 2 years lol! I've never had stomach issues before except when I had hepatitis A that I got in Lanzarote! So I do think the Urso plays a lot in this. No side effects fro. Pbc until I started it.

Lynn

Lilydoll10 profile image
Lilydoll10 in reply toroseter

Does it get worse with certain foods?

Casslucy profile image
Casslucy in reply toLilydoll10

I don't think so. Just generally I think

Candy12 profile image
Candy12

I wonder if you take your Urso with a meal or on an empty stomach. I have to take mine with a meal otherwise i do get a lot of bloating and I mean a proper meal, a couple of biscuits is not enough for me.

The other thing that may help if your taking it once a day, try taking in split doses, twice a day. After 15 years my doctor still says take it twice a day am/pm for me anyway. I did /do if I forget the am dose take it all at once at night but that is not good for reflux. So it might be worth a try.

. The other thing to look at is, some people are sensitive me included to the fillers rather than the drug itself in some of the generics, perhaps have a discussion with your doctor they may be able to try a different make/brand and see if it improves.

Urso is slow to get fully into the system to be working and slow to leave , so I doubt not taking it for a week will offer much in the way of information to be honest. It has to be said though check with your doctor, if you decide not to take they are be better placed to give you advice.

Casslucy profile image
Casslucy in reply toCandy12

Hi CandyYep I take half with my breakfast and half with my dinner. I'm supposed to take 1000mg but everytime I go over 750 mg I seem to end up with issues. I try most times to forget about having this and just carry on normally but when you're stomach plays up and you feel you have a bubble in your throat its constantly on Your mind!

Lynn

Lilydoll10 profile image
Lilydoll10 in reply toCandy12

How do you know you are sensitive to the fillers and it says to take my Urso tablets at bedtime so I’m not sure what to do

Candy12 profile image
Candy12 in reply toLilydoll10

I’ve been taking URSO 15 years, and in the early years I had Ursofalk brand( UK) but when the pharmacy changed to an independent, I started to get generic urso, fast forward to 2020, I started getting different generics sometimes three different ones in the same prescription. That’s when I started to get stomach issues from indigestion to full blown sickness, over a period of nearly a year I was able to weed out which ones were causing the issues. I would take them but if I got any issues I started give the offending ones back to the pharmacy . The pharmacist explanation was it could be different fillers. So I’ve gone back to URSOFalk and been fine since.

Have a chat with your doctors if your having issues or want to change there prescribing in any way like the time of day etc, that way they can monitor any changes.

Lilydoll10 profile image
Lilydoll10 in reply toCandy12

Thankyou that’s really helpful

Samanthaann profile image
Samanthaann

same for me. Been on Urso for 2 years and last year began having stomach gurgling. My normal bowel movements changed as well. The gurgling will last days or weeks and then subside and then come back.

Casslucy profile image
Casslucy in reply toSamanthaann

Hi Samanthaann Yep I think the medication is worse than the pbc. I never had any symptoms when I was diagnosed it was just a routine blood test and the lfts stayed up but only mildly. It was diagnosed with a liver biopsy. He first thought it was nafld then autoimmune hepatitis but then by biopsy decided pbc! Does make ypu wonder?!

Lynn

Samanthaann profile image
Samanthaann in reply toCasslucy

Yes I agree. My situation was identical to yours. My labs were not off the chart either. I did not have biopsy only labs to diagnose mine

Casslucy profile image
Casslucy in reply toSamanthaann

I had to have one as my autoantibody was smas and not ama or Ana. Thank goodness it just showed very mild inflammation and no fibrosis. Fingers crossed it stays that way. USound didn't show anything

234WARD03 profile image
234WARD03

I have come off for a while and gone back.on them after gastrentiritus. However a couple of months later and possibly over reacting to a virus, possibly,.... reflux turned into sickness and very loose stools. I suppose our immune system sometimes goes into overdrive, that's pbc. So I stop urso while I am getting severe reflux and resume as tummy settles.

Would be silly to stop it altogether and end up facing god knows what. So worth trying to persevere. however talk to specialist about your own case. We can o ly tell you about our journey which might be entirely different to yours. Check with your liver nurse.

Casslucy profile image
Casslucy in reply to234WARD03

I'm just going to stop them for a week to see if there's any difference and then start them slowly again. After all the stomach issues I feel like ive a wee air bubble stuck in my throat! It never endsLynn

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