Urso post transplant

[Huggy7614]

Hi,

I originally posted this on the liver trust forum, but it was suggested I put it here as well!!

Evening all......yep, I used to be a copper!!!

Had a trip to qehb today to see hepatologist, first time since tp, having had pbc. Always seen surgeons till now. Recovery from op has been thankfully very good, with excellent bloods. So all good there

But, something I had asked other doctors before was concerning the possibility of pbc returning in my new, lovely liver. The consensus, although not definitive was that it may do but it may not!!!

However, the hepatologist broached the subject with me today, which surprised me, and said there is now some recent study evidence to show that taking Urso post tp for pbc sufferers may be advantageous and has now put me back on it, albeit a slightly lower dose than before

Anyone else heard of this??

Andy

[Elliweim]

I have heard they like to still continue you on the drug after transplant as it can reoccur.

[Candy12]

Have a word with the PBC foundation, there is link at the top of this page, you can call there advisors. They have up to date information that’s backed by there medical team.

[Huggy7614 in reply to Candy12]

Hi Candy,

I don’t have a problem with the decision at all, to me it makes total sense. Just opened it up as a discussion point. Thanks for your thoughts. A.

[butterflyEi]

Yes, when you look across the various forums including those on face book there are some reports of PBC returning in the new liver. Congratulations on your new liver, I hope you are well on it and continue to be so.

best wishes

[cazer]

Yes.. I had txp 2017 and am now back on urso...

Unfortunately I've had some complications... And they do think pbc is recurring... Think it's pot luck.

I have only a tiny bit of itch, pretty much no nausea and I'm alive and kicking x

[Huggy7614]

Hi Cazer, yes, it’s always mentioned as a possibility that it may return - we just hope that it doesn’t. So sorry that your symptoms are returning. Fingers crossed that it works out ok. Good luck. Andy.

[Kate50]

Hi Andy, I had my transplant 4 years ago today 😁 😇 and I was told after a biopsy just over 2 years ago that pbc was back in my new liver and I was put back on urso, apart from overwhelming fatigue I have no other symptoms, when I asked why I wasn’t put back on urso after transplant I was told it wasn’t licensed for prophylactic treatment 🤷‍♀️. After the biopsy, which was carried out after my bloods were a bit deranged, I asked about the return of pbc and I was told the pbc never goes away it just isn’t in the transplanted liver and if it returns it is usually much slower in severity, so here’s hoping, anyway congratulations on your transplant and I hope you stay pbc free for many years to come 🌸🌸

[Moopie]

Hi! I’m 18 months pt & recently back on urso for the same reasons as you. I don’t mind either. If new research shows it’s helpful then I’m more than happy to go along! Here’s to Living with PBC 😁👍

[Hidden]

Great post Huggy7614, and great timing for Bookwormfanati who posted yesterday that she will be referred to same place for tp.

I don't remember anyone mentioning Urso post-transplant, but now you mention it, it seems like a no-brainer - we live with PBC until a cure is found.

Best wishes, I hope your post-transplant journey is a smooth one.

Phyllis Stein

[Ree1321]

Congratulations on your new liver so happy for you. Wishing you all the best. ❤️