Urso stopped working

[MrsFlee]

hi everyone

Can anyone help

Urso has stopped working and being put onto Ocaliva.

i have been on Urso since diagnosed in 2012.

Not sure what to expect ??

Thank you

[gillrich]

Hello do not worry get in touch with the pbc foundation Pbcfoundation.org.uk

They offer the best up to date and accurate info on all things pbc a fabulous charity set up nearly 30 years ago

All the best x

[MrsFlee in reply to gillrich]

Thsnks i will do

[Turquoise2075]

Hi Mrs Flee, I’ve been on Ocaliva since June. The only side effect for me was a bit of an increase in itching for a short time which has gone now. It also seems to have greatly reduced fatigue and cognitive symptoms I was getting. I am on 5mg. As gillrich suggests, the PBC Foundation is a great resource if you have concerns or questions. I hope it works well for you.

[MrsFlee in reply to Turquoise2075]

Thank you for your reply it has helped me alot. I will post it on the pbc foundation.

Thanks again

[LindaVillanova]

Hi there, I had no side affects at all from OCA. Eventually it also wasn’t doing the entire job so they added a 3rd line - bezafibrate.

ALP is now in normal range for the first time in 8 years . Hope all goes well for you!

[Lena2011 in reply to LindaVillanova]

Hi your reply is so nice too see after 8 years ur numbers r in normal range, I’m 2 years in on urso and still my alp is 515 and not been given second line treatment yet!!!

[LindaVillanova in reply to Lena2011]

Lena, ask them for it. Wish I had done sooner for the last med as it may have prevented stage 4 fibrosis I reached. I’m well so it’s ok- just hate the cirrhosis label!