Non -responder to ursodeoxycholic acid

[Rozm2004]

Hi everyone

So I saw my consultant on 18th June and he told me I’m not responding to urso !!!

He said I fit the criteria for oclavia but would need to take this to an MDT meeting first,

I’m currently off sick and have had a melt down,

I have been taking urso for a year, and completely changed my lifestyle ie packed up smoking stopped alcohol altogether even though I wasn’t a big drinker just socially, now I feel like why was the point,

Has anyone else gone through this I really don’t know which way to turn and I’m waiting to hear from hospital about Ovlavia,

I’ve also read some quite awful side effects like worsening the itch

Any advice much appreciated

Thanks

Roz xxx

[gwillistexas]

Sorry to hear you’re a non responder to Urso. I take Ocaliva alone. Itching is always a possibility but I’ve had none, no side effects at all. Please keep us posted. 😊

[Alison2306]

Hi there

I’m sorry to hear you’re not responding to urso. I was the same as you. I’m now on ocaliva and the LFTs are changing

I’m now into week 14 of taking it and I itched at first but it’s now subsiding. I never itched from PBC but 2/3 weeks into ocaliva I started.

It does get better I promise. Hopefully you won’t itch.

Keep us posted. But ocaliva has made me feel normal and the figures speak for themselves xxxx

[martinap]

Ocaliva was not available to me and they put me on fibrates in addition to Urso. It brought figures down to normal with three months for first time in 15 years no side effect. There is lots of good and recent research out there about this. It is also included in protocol now. Look for bezafibrate PBC and fenofibrate PBC. I am happy after all I didn’t qualify for Ocaliva. Good luck and keeping fingers for you!

[Rosie2410]

Hi Rozm my circumstances sound a bit like yours. I was diagnosed 5 and half years ago and was told 3 years ago I was a non-responder to urso. This really bothered me and I didn’t know what this all meant and felt very worried about it. Earlier this year my consultant told me I fitted the criteria for Ocaliva and it would need to be taken to MDT. I asked him what the criteria was and he explained non responder but early Pbc with no varices or other complications. I also was worried about the itch as I had this at the beginning (this lead to my diagnosis after seeing my GP) and I didn’t want that to return as the itch had disappeared after 2/3 years. He also explained that I would be starting on low dose and this would be increased gradually which should prevent the itch returning. I also mentioned I’d seen on here about dosing and risk and he explained further explained that in US there had been some issues of dosing inaccuracies and suitability and that some patients in US were more advanced with PBC and their criteria wasn’t as robust as UK. The upshot was that I’m on Ocaliva and started on 1 tablet 3 times a week and thankfully no itch🤗🤗. I’m now taking it everyday with Urso and no itch and early blood tests (at GP surgery) showing ALP reduction. I’ve so far had no adverse effects thank God!

On a further note re Ocaliva, I’ve found the communication that my case had been agreed for Ocaliva and that I was to receive this drug as very poor and lacking from QE in Birmingham. The way I found out I was by a telephone call from Acura who wanted to deliver the medication and asking when I was available. The drug is delivered to my home address and needs to be signed for. I have fed my dissatisfaction with this to the QE Liver unit.

[Starfish72]

Hi Roz

I have had high ALT for 2 years now despite taking Urso, bezafibrate.

I am at stage 3 so im told.

I too have been told im a non responder and my consultant has taken it to his panel to get NHS England to fund Ocaliva.

I have an appointment in 2 weeks so will let you know.

I too feel like giving up all meds.

I am apprehensive about Ocaliva as I suffer with itch and believe it can temporarily increase. Also rapid weight gain on face on tum, anyone experienced this?

Please keep in touch and we can support each other.

Take care

Jane x