Hiya i have been diagnosed with pbc and im ... - PBC Foundation

PBC Foundation

9,391 members8,002 posts

Hiya i have been diagnosed with pbc and im on urso 2 tablets twice a day but they make me feel very sick and want to stop taking them

susan6466 profile image
13 Replies

please can anyone give me advice

Written by
susan6466 profile image
susan6466
To view profiles and participate in discussions please or .
Read more about...
13 Replies
Puddles profile image
Puddles

Hi Susan6466,

How long have you been on the Urso - I felt some slight nausea for the first couple of weeks then it went away completely. You should talk to your doctor, he may be able to alter your medication regime to reduce the side effects.

Puddles

susan6466 profile image
susan6466 in reply to Puddles

Thanku i have been on urso for about 8 months now i will be seeing my consultant at the end of this month so i will see what he recomends so hopefully will sort something out thankyou for advice

Hello Susan6466.

As Puddles has asked, how long since you started on urso?

I started urso Dec 2010 and I did have initial side-effects that I never had prior to starting them. The side-effects last a few months for me. I had heartburn a lot in the evening and also some bloating. I also started to have odd bouts of constipation that I never had previously.

The urso can take a bit of time for any side-effects, of which I believe nausea is one of them so it might be temporary for you.

How are you taking your urso by the way? I was originally going to be given 4 tabs per day (I'm on 600mgs daily) but said I'd not take them like that so I was given 2 a day at 300mgs. I originally took the urso one with breakfast and then one around 9p.m. with a couple of dry biscuits. I then decided after several months when the side-effects started to settle (and I was starting to have good blood results) to alter my tablet taking and took one with breakfast and then one with evenng meal.

I have experimented with my tablets, taken one with breakfast, chopped one in half and taken at lunchtime and then taken the other half at teatime but it made no difference. I did take them altogether at breakfast but I found that I started itching badly later morning, something I never do so after a few days I went back to my usual, breakfast and evening meal routine. I have thought to take them altogether in the evening but I somehow don't think that would feel right for me so haven't done so.

Maybe you could try having half a tablet (if unscored, use a sharp knife like I did, being the white chalky things I had no problem. I then kept the remaining half in a tiny plastic bottle so it eoulsn't absorb any moisture), take those 4 times a day and see how you feel.

Otherwise the only suggestion would be to speak to your doctor.

It has to be noted there doesn't appear to be a right or wrong way to take urso, altogether, spread out during the day, etc. but take note if you are on any other meds work with those as some meds you take at varying times to certain tablets.

Hang in there and trust me but when you have your repeat bloods done and you yourself see a better result then you could be spurred on. I was sceptical about taking urso at the start, moreso as it is generally a med for life but I ploughed on (even if almost 3yrs on from starting it ish hasn't eradicted the itching totally for me).

susan6466 profile image
susan6466 in reply to

Hiya i was taking 2 tablets at breakfast and 2 in the evening but the nausia was getting bad so i was so tempted to stop taking them but il try one and see how i go then when i see my consultant il see what he suggests thankyou for the advice

in reply to susan6466

Didn't realise you are on 4 tabs a day, that is what I will be on this week now that the 300mgs have been recalled. 4 x 150mgs but I'll continue to take breakfast and teatime as usual.

If you are on 4 tablets, perhaps you could also try taking one morning, one lunchtime, one evening meal and then another at bedtime with a dry biscuit and drink?

Or you could try as Lockness did, build them up.

Lockness profile image
Lockness

Hi susan6466,

I started Urso soon after being diagnosed with PBC in Feb last year. I am on 3 tablets a day but was advised, by my consultant, to take 1 daily increasing gradually to 3 a day if tolerated. I took this advice and have not had any problems. Perhaps this could work for you? But best check with your GP or consultant first.

Good luck.

susan6466 profile image
susan6466

Thankyou i will try that i see my consultant soon so will check with him thankyou for the advice

I thought my itch was made worse in the beginning of taking urso and when I went back to the consultant 6wks later after starting them and mentioned he said if I didn't want to take them then don't! He was so helpful....not!

So I waited for the blood test results on urso and they were pretty good so I continued on with the urso.

If you decide to take say 3 tabs a day instead of 4 for present, then make the consultant or GP aware when they repeat the bloods as that will add to the results maybe.

Shirleybutler profile image
Shirleybutler

Don't stop the Urso it helps stabilise the condition I also feel sick particularly when I wake up and feel pregnant with the sickness however at 74 years of age ii doubt that ha ha .I hope that someone can recommend a cure regards Shirley

susan6466 profile image
susan6466 in reply to Shirleybutler

Thankyou i will mange on with the urso and see what my consultant suggest when i see him

Poppygayle profile image
Poppygayle

Yes I agree with Shirleybutler don't stop the urso it does work ,I have been on four a day for four years I take two in the morning with breakfast and two with my evening meal I find this helps with the nausea ,the sickness can come on in waves during the day for that I usually have a dry cracker or biscuit and this usually takes the edge off .x

susan6466 profile image
susan6466 in reply to Poppygayle

Thankyou for the advice was very helpful

Anne123_45 profile image
Anne123_45

Try taking all before bed.. sleep through the side effects.. I'm in the north east England that's what I was told to do..