PBC Foundation
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Any partial responders to URSO out there?

Hi All. I was diagnosed almost 3 years ago. My LFTs were “grossly abnormal”. They really were through the roof. Started URSO straight away and while they have come down hugely (and still are coming down albeit 1 or 2 points only but at least in the right direction), they are still nowhere near normal. Last time I was with my specialist he suggested I go back to splitting the dose of URSO throughout the day to see if that has an effect so next blood tests will be interesting. I’ve heard from Non-responders on here but not partial responders like me. Any out there? What feedback are you getting from your doctors? Thanks in advance

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Morning Lisa, Happy Easter! I was diagnosed last November and My LFTs were really bad too. I have been on Urso since then and like you my levels have come down but are still nowhere near acceptable levels. At my last appointment my consultant said that he didn't know if I was a responder or not and I might be a partial responder. It could be that the levels were so bad to start with it might just take longer, so he wants to wait another 3 months to see. If I am sill not responding fully he wants to start me on Bezafibrate along with the Urso. I know it is still early days for me compared to you but I would be interested to know how you get on with splitting your dose.

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Thank you for your reply and Happy Easter to you too! Hopefully yours will come down more - it’s still early days. Yes I’ll post an update after my visit (May). Best of luck to you in the meantime 🍀

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Hi again. Just posted a (positive!) update!

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Hi jjones

Happy Easter to you also. I was diagnosed in 2011 and my LFT's were pretty high. Have been taking URSO ever since and my levels have come down but my consultant would have like them to come down even more. She has since added Bezafibrate to see if it makes a difference. I believe it's actually a cholesterol lowering drug and I know people with PBC are prone to high cholesterol . Have to see if it makes a difference. Only been taking it two weeks. Best wishes Eileen

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Hi there

My Urso dose is split ..one three times a day and bloods are far better. All the best,

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Oscardog...would seem splitting would be better. Then you don’t have such a big dose all at once. When I took Urso, I took 2 x day, morning & night. I spaced it 12 hrs apart so I had steady flow around the clock.

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Thanks for replying. That’s really interesting. The patient information leaflet mentions taking it all at one time after youve been on it for 4 months so was surprised when my doc recommended going back to splitting it. Maybe the manufacturers need to update! Sounds like it’s worth a try anyway. Thanks again.

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My urso prescription says take 2x a day which I interpret to be after breakfast & after dinner.

I don’t think I read the patient info. Just followed the directions on bottle.

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Hi Lisa

I was diagnosed in December 2017 and started the usual meds. I am seeing my Consultant (gastro) every 6-8 weeks who is monitoring my bloods. I have PBC/AIH overlap. My results are a little mixed - all going down but some more 'stubborn' than others. My Consultant is thinking of reducing my steroids and introducing azapriathene (excuse spelling) if the tests I have just had done are favourable. For me, I think the PBC is the lesser of his concerns at present. You could always ask your specialist about Oclavia if the URSO doesn't seem to be working although I have heard that it costs around £2500 per month so not sure how keen the NHS is prescribe this. My Consultant also tells me it can take up to a year to know whether you are a responder or not so I will have a better idea about my own situation in another 6 months time. Hope you manage to get things sorted out soon. Keep us informed if splitting your URSO dose helps (I already split mine).

Best wishes

Jane

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Hi Jane & thanks for taking the time to reply. I’m in Ireland and Ocaliva is not available here yet. In any event my specialist is not a fan. He accepts it brings the LFTs down but doesn’t believe it has been proven yet to have any affect on progression or likelihood of requiring a transplant. So not an option for me at the moment. But I will keep you posted. (PS anyone on Ocaliva please remember that is my docs opinion - not mine necessarily- and he is entitled to it)

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Hi Lisa

Thanks for getting back to me about Oclavia - I hadn't heard anything about it possibly not working well so will consider/research this further if it ends up being an option for me if I don't respond adequately to URSO. These AI conditions are a bit of a minefield really! You have not option but to research on line to keep informed but are then faced with lots of conflicting views. Anyway, hope you get sorted with this strange condition. For me, one of the main issues is trying to accept I have these 'chronic' conditions whilst still feeling well (minor itching and dry eyes and mouth being the worst symptoms - TOUCH WOOD!). Best wishes. Jane

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Hi Lisa Colleen here. I started on ur so 2012 and my liver function has come down but never normal. My Specialist said thats OK. Good luck

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Thank you Colleen. That’s reassuring. I did ask my doc if he expected them to have come back to normal by now and he didn’t really give me a straight answer. He said “well I would have liked them to”. So thanks again for that.

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It is difficult to reply to the comments on here without knowing where you all live.

However, let me state in really simple terms:

If it is decided that you are not adequately responding to Urso, then the second-line therapy recommended in EASL guidelines is Obeticholic Acid. This is the only other therapy licensed for PBC.

NICE approved the drug. SMC approved the drug. EMA approved the drug. FDA approved the drug.

The NHS in the UK has a fund set aside specifically to pay for the use of OCA in non-responders. NICE and SMC have agreed that the drug is not "too expensive". This is the recommended second-line therapy.

Bezafibrate is not licensed for use in PBC. Bezafibrate has not been thoroughly trialled nor thoroughly peer reviewed nor even published, as far as I am aware. We are awaiting the publication of a small-scale study from France but I have not yet seen the publication.

If there is no reimbursement protocol in your country for OCA, contact us directly and let's see what we can do to help.

Yours, as ever,

Robert.

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Thank you for posting that.

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Also, it was very encouraging to me when I listened to Dr Robert Gish at the Roundtable discussion. He said he feels in the very near future, it will be found that OCA has the same outcome as Urso.

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Thank you Robert

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Hi Robert

Thanks for the information about NHS funding of OCA in the UK. It's good to know that, if you end up being a non-responder, there should be no problems with accessing this treatment.

Regards

Jane

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