Reacting to urso

[Twinkle26]

I have been on urso for just over two years but around two months ago I had a adverse reaction to it and I’m now no longer prescribed it.

I’m to be monitored every 6months, but now my itch is bad again especially the back of my hands and my ankles.

Has anyone else reacted to Russo and what course of action have you been following.

Thanks, Carol

[Candy12]

I can’t comment on reacting to urso, but I appear now not be responding to it and have had discussions about taking OCA.

Have your doctors not discussed putting you on OCA as the second line treatment, it’s for people who either can’t take urso or are not responding to it.

There are medications that you can take to help control the itch. I don’t take them but I’am sure others will comment soon and will be able to give you some advice about them.

[Karaxxx]

I was put on urso in March it makes me itch terribly so I was told to stop after 6 weeks. After a week of stopping it went away. Was then told to start on a lower dose & increase gradually which I have been doing for 2 weeks & the itch is back 😔 my bloods improved dramatically whilst I was on it at the full dose. I am seeing the consultant tomorrow so I am hoping they can give me something to counteract the itching.

[NotorDJP]

I’ve never reacted to Ursodiol that I’m aware of. I don’t have the itch with PBC either though

[butterflyEi]

I am an URSO responder but I do suffer with the itch. I am prescribed cholestyramine, rifampicin and sertraline making quite the cocktail. I think there are some people who have been offered something like bezafibrate which has had a knock on beneficial effect for the so called itch of PBC. I wonder if you contact the PBC Foundation directly whether they can tell you for sure about the bezafibrate.

I hope you find something to help you.

[Jeanb47]

I get very very nauseated and vomit if I take URSO. So I’m on nothing for PBC. diagnosed June 2017. Fibroscan was 7.5 all LTFS increased. Last time I saw Hepatologist Nov 2018 fibroscan 9.5-10. Still have increase LTFS.

Biggest symptom is I’m very fatigue with very little tolerance to exercise. Occasionally I have itching. I have pain I upper right abdomen.