Stopping urso

[burbjay]

Hi there. I've been taking urso for 9 years but have gradually become intolerant and have stopped taking it two weeks ago. Feeling a lot better now. I was wondering if anyone else has stopped taking urso and why? Thanks.

[emerich]

Hi burbjay, I finally started taking destolit (urso brand) earlier this year, 900mg. Fine for a week then had whole body severe itch, followed by large weals all over, swollen eyes and lips and my blood pressure dropped to 64/36. Took about 3 days for effects to completely disappear, taking antihistamine. At present taking nothing for pbc and having 2 monthly blood tests to monitor things. Had a heart attack last September but now unable to take statins because of their effect on liver. I have no pbc symptoms which I'mvery thankful for and believed to be at stage 1. Can I ask what stage you're at, and do you have any further treatment planned as replacemnt for urso?

[burbjay in reply to emerich]

Thank you for your reply. I have never been told what stage I'm at but was diagnosed 9 years ago. I came off urso because I was having palpatitions, burning tongue and hands, bad stomach and feeling very unwell. I'm due to have an ultrascan, alpha protein test and see my consultant in September. I'll keep you informed of any medication he suggests. I'm a bit scared at present as can't take any medication at all including painkiller or antibiotics. I hope you keep well and thanks again for replying.

[donna01]

Hi Burbjay,

I too stopped urso due to nausea and hair loss. Was only on it for 6 months and came off of it for 2, and now only do 1 a day. My body does not like it for some reason and I still have the horrible nausea. I too feel better off it. I never had stomach issues until I went on it.. Isn't that strange?

[burbjay in reply to donna01]

Thank you for replying. How long have you been back on urso and can you take any other medications?

[donna01 in reply to burbjay]

I have only been back on it for a month. I do not take any other medicines as I luckily dont need any

[PBCFoundation PBC Foundation]

Hello burbjay,

I have sent you a direct message

Regards

PBC Foundation