Catch 22: Came off Urso as they make me feel... - PBC Foundation

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Catch 22

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Came off Urso as they make me feel ill but i feel ill off them also. :-(

I know i have to suffer it till my body gets use to them but i cant suffer them and go to work. My work very understanding to a certain extent and offered me part time till i feel better but cant afford to financially.

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18 Replies
Anne123_45 profile image
Anne123_45

I know I've said this on here before.. But just in case you haven't seen my comments.. Try taking all your urso at night.. Works for me x

in reply to Anne123_45

I am still trying it and so far so good, I don't feel sickly and bloated during the day up to now, I am on day 4 :o)

Anne123_45 profile image
Anne123_45 in reply to

Great Linda fingers crossed

in reply to Anne123_45

I think I will continue taking my urso all at once with my evening meal now JP as i feel loads better than I did, I will check with my gastro that it's okay to do this but i am sure he will just be delighted that i am taking it. Thank you so much for the tip, you have made me feel better anyhow :o)

Anne123_45 profile image
Anne123_45 in reply to

Happy to help.. I'm always I'm here looking for reassurance and guidance.. It's a great community

Anne123_45 profile image
Anne123_45 in reply to Anne123_45

Also just found out my Alp has went from 1020 in may to 200..Whoop whoop

hi jpmac,

thanks for your reply.

I do take it at night but it still messes me up. I don't know what to do x

Anne123_45 profile image
Anne123_45 in reply to

O no.. You take it with a snack?

I have been taking all mine with dinner at 7.30 to 8

hi ,

I take mine after dinner about 6ish. x

Oidra profile image
Oidra

I take 3 Urso after I have had my breakfast. I will only have Ursofalk from the chemist. I hope you can find the best time of day for you, as you can tell, different times work for different people.

Hello.

How long did you give urso before stopping taking it? Did you have any bloods checked whilst taking it to see what difference it was making?

I was sceptical about taking urso myself back in Dec 2010 at diagnose but reckoned would give it a go and see what the first set of bloods showed from taking.

Nearly 3yrs on I am still sceptical. I say this because I think although it can help it can also cause certain other minor problems. For me it is bouts of constipation and I know it is due to urso as I never had prior to taking urso .

I think I'm about to be put in a predicament myself now due to a recent tablet mg change and know it is a different pharmaceutical company who make the 150mgs (used to take 300mgs). I started taking my next repeat script in my new 150mgs form recently (4 tabs a day as opposed to the 2 I used to take at 300mgs - the 300mgs were recalled July). I've felt different in the last week and know it is the tablets.

Have you asked if you can have a different formulation of the urso, perhaps a liquid version or capsule or different brand to see if it helps as sometimes changing to a different brand can make a big difference. Urso is supposed to be pretty well tolerated but even myself found I had initial side-effects in the beginning. I spent a few months with dreadful heartburn at night and also bloating but it all vanished. I might not have continued myself but for seeing a change in the bloods 8wks into starting urso.

Apparently there is no wrong or right way to take the urso. I've not yet taken all mine at night in one go as when I originally started urso, I took one with breakfast and one at 9p.m. with a few dry biscuits and then heartburn started an hour or two later so after awhile I switched to taking the final one with evening meal. I find this has worked best for me since. I have tried different variations of the urso (splitting in half and taking 4 a day but that didn't seem effective to me, taking full one morning, half at lunch and half at teatime but that didn't feel right either) but for me the worst one was taking the lot at breakfast time, I started to itch badly later morning and knew it was the urso as itching for me at morning and during the day doesn't actually happen (I'm a night-time itcher).

Have you tried perhaps taking just half the dose over the day as opposed to the fully prescribed mgs and seeing what that does first? It maybe the case if this didn't feel so bad you could eventually work it up to the full lot.

sydney profile image
sydney

I was taking 3 a day with breakfast for a year, however I stopped taking it in June as I feel it makes the itch worse, and it wasn't making any difference to my blood results, I am waiting to go in for a biopsy so will decide if I'm going to take it again depending on my results from biopsy.

I am still getting on okay with all my ursofalk at night, but I had to ditch my calcium and vit D, it just does not do for me in anyway shape or form, will probably get a telling off from the bone unit tomorrow, but I am more concerned about my liver like we all are.

littlemo profile image
littlemo

I agree with Peridot try building up the dosage gradually and failing that try a different brand or the liquid form of the Urso. Most of the literature does seem to say the Urso is effective in slowing down the progression of PBC. I remember when I first took it back in 2002 I was prescribed it in divided doses and it seemed to agree with me ok and I think the itch lessened however if memory serves me right when I started to take it all in one dose at night before bedtime

littlemo profile image
littlemo in reply to littlemo

the itch got bad again and I had to go on Questran also for the itch. Now I wonder in hindsight if taking a larger amount of Urso in one go meant my body didnt like it that way. I aactually went off it last yr as felt it was contributing to the itch but since coming off it my LFTS are lot worse so it must have been doing me some good. Good luck and do keep your dr informed of the probs your having with it.

Shirleybutler profile image
Shirleybutler

Keep taking the Urso it stablises the condition ,we all suffer from symptoms of some sort but don't give up Urso does help, sorry you feel so bad ,but many sufferers do. That is no consolation to you but at least you know others understand how you feel.regards Shirley

Hi , thanks for all the replies. :-) .. they are all very helpfull .. Back on it and although feel terrible i am going to persevere.. x

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