Update: Partial responder to URSO - back to... - PBC Foundation

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Update: Partial responder to URSO - back to splitting the dose

LisaC22 profile image
9 Replies

Hi All - I posted a couple of months ago about being a partial responders to URSO. Diagnosed 3 years ago when LFTs were sky high. After first four months took daily dose of URSO in one go as recommended in patient info leaflet that comes with tablets. While LFTs have been slowly coming down in the last 3 years they were still nowhere near normal. 6 months ago my specialist recommended I go back to splitting the dose. Got my results today and numbers are all back in the normal range! First time since diagnosis. So very happy and wanted to share with everyone, particularly in case this can help someone else. Obviously I am not a doctor & not recommending anyone changes how they currently take their medication but, if you are in a similar situation, then maybe you should discuss with your own medical advisor and get their opinion.

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LisaC22
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9 Replies
Ballymahon2 profile image
Ballymahon2

Thats great lisa and good to know i still have to get my blood results if the levels dont come down enough will try that

Ktltel profile image
Ktltel

Yahoo!!! Man, how wonderful. Have you done anything else? Diet, exercise? Anything? That news is worth a happy dance!! 👏👏👏❤

Stella ❤

LisaC22 profile image
LisaC22 in reply to Ktltel

Thanks Stella. Definitely worthy of a happy dance! I’ve eaten a healthy diet and exercised since diagnosis but only thing different since my last blood tests was splitting the dose so quite sure that’s what did it. Hope you are doing well. 🍀 PS I answered you 2 days ago or at least I thought I did but looks like my reply didn’t post. Better late than never! X

That’s great news after being a partial responder, and to be back to normal range.

My ALP never quite makes the normal range and sits at around 170 and my consultant has always insisted I take two doses so perhaps there’s something in that.

kingsnorth profile image
kingsnorth

Thanks for sharing Lisa thats interesting. My consultant told me from the start to take them 3 times a day. I was diagnosed last February and March my lfts were on there way down x

Ottley3 profile image
Ottley3

That’s such wonderful news! I currently take 2 tablets of Urso in the morning plus Ocaliva, and one more Urso before bed. I will ask my doctor the next time I see her if there might be a benefit to 3x/day.

Rosie2410 profile image
Rosie2410

I’ve been taking my Urso in one dose and I’m non-responder to urso. I was told initially I was a partial responder and then the consultant didn’t like that phrase and said I’m a non responder. I’m now taking Ocaliva and Urso. I will ask about splitting the urso dose next time I’m at hospital.

LisaC22 profile image
LisaC22 in reply to Rosie2410

You definitely should. And keep us posted on how you get on. Good luck 🍀

DonnaBoll profile image
DonnaBollAdministrator

so glad to hear your numbers are much improved. My hepatologist has suggested my taking my dose of Urso 12 hours apart. For those who seem to have GI issues taking Urso, some find it helpful to separate the dose throughout the day or even take it all at bedtime - this often helps avoid the nausea. We often have to find what works for each of us.

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