Ocaliva UK: Hi there. 🙋 I was diagnosed with... - PBC Foundation

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Ocaliva UK

Starfish72
Starfish72

Hi there. 🙋

I was diagnosed with PBC last June at 44yrs old and although my LFT have improved on Urso, my AST,ALP remain in 400s +

My consultant is starting me on Ocaliva and just wondered if anyone else in UK have tried this? It's a first for my consultant and his hospital too, so I'm feeling like a guinea pig!!

Any info would be most welcome 😘

22 Replies
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Hidden
Hidden

Hello Starfish72.

I am in the UK and as yet this Ocaliva is not marketed here but I believe there is on-going trials surrounding this in the UK with the expectation to market it in the future.

Starfish72
Starfish72 in reply to Hidden

Hi Peridot

I am in the UK and starting on Ocaliva as it just been liscensed here. I have tried all other meds and nothing else works.

Hidden
Hidden in reply to Starfish72

Hello again Starfish72.

You are more ahead of this Ocaliva than I am, thank you for your response. Last time I did read it wasn't yet available here so I shall certainly see what I can find out. I think it will be interesting to know what's 'out there' but also like yourself to hear about patients who have been offered it now as it could be me in future.

I have just had a look on the net and on an NHS website it does report on this new medication. I've popped the link on here for those interested.

sps.nhs.uk/medicines/obetic...

Hello Starfish,

Thank you for this post.I too am not responding to Urso and knowing this is available now in UK is really useful for me as I see my consultant soon.I have read really good results from trials and USA and would really like to try it as now have cirrhosis need something !!.I hope it works for you please let us know how you get on.

Jane

Karaliz
Karaliz in reply to jane1964

Hi Jane

I have been on OCA for 4 years ( stilll in trial here in Australia so very lucky to have access to it ). I also have cirrhosis & stopped responding to Urso - the OCA definitely reduced my ALP and GGT in particular & the general consensus is that it has pulled me back from heading towards liver failure .

I was very sick before I started OCA & it has bought me time & stabilised me - for now.

I work 3 days/week as a nurse, have a big family & have had PBC for 14 plus years ( diagnosed at 38)... OCA has been wonderful for me personally.

Best of luck.

Karaliz

jane1964
jane1964 in reply to Karaliz

Thank you for replying.Your results sound very promising,it's really helpful to read this has worked so well for you.Jane

is this med only in the UK?

jane1964
jane1964 in reply to Becca75

Hello Becca,

I think it's been available in America for few months.

Jane

People in the States have been prescribed OCA.

It was approved in Europe but we are awaiting fiscal approval. It is available and being prescribed in Germany but it is not yet in the UK.

My understanding is that a patient must be on Urso for a year to ascertain if they respond or not. Only after this year, and on the assumption of non-response to Urso can OCA be prescribed.

I hope this helps.

Hi. My consultant is considering me for Ocaliva for the continuous itching I've had since before my diagnosis of PBC in 2010. I'm very wary and nervous whenever I've been started on drugs I've never had before, but I think I am welcoming to try Ocaliva in the hopes that it will help me. My Alk Phos started at 1200 and very rarely goes below 500. This week it was down to 566 from previous level of 699 in July. Fingers crossed that I am a suitable candidate for Ocaliva. I hope it is working well for you without any problems.

gwillistexas
gwillistexas in reply to Sandymh

Sandymh, I have been on Ocalvia 2 months. No problems. After 1 month it brought my Alk Phos down from 240 to 179. Am waiting 2nd lab any day now. Anxious to see if it came down more. It is quite a process getting Ocalvia. Took me 3 weeks. Let us know😊

Sandymh
Sandymh in reply to gwillistexas

Thankyou gwillistexas. My next appt isn't until early March, but hopefully I will be suitable for it. It would be good to see if it brings my Alk Phos right down and itching relief would be so welcomed. I'll keep you posted.

gwillistexas
gwillistexas in reply to Sandymh

Pls do😊

Sandymh
Sandymh in reply to gwillistexas

Hi gwillistexas. Had my appt and told my consultant that I have read up on the Ocaliva and I don't want it. She understood my reasons. I see her again in July. Thankfully my itching is quite mild at the moment. Fingers crossed it stays that way for a while.

gwillistexas
gwillistexas in reply to Sandymh

G’morning. I hope you do well in your current treatment plan. I’d rather not take any of it, but if it helps me then I have no reason to not take it. OCA has helped many who cannot tolerate Urso or did not respond. I’m thankful OCA was out there as an option. Good luck to you🦋

Sandymh
Sandymh in reply to gwillistexas

Hi gwillistexas

How are you doing now that you've been on the Oca for a few months? My consultant told me that it is taken along with Urso. Do you have to do the same?

My itching is driving me crazy due, to not being able to get my usual Questran for over 6 months now

Hope you are doing well on the Oca.

gwillistexas
gwillistexas in reply to Sandymh

Sandymh...hello! I’ve actually been taking OCA little over a year. I take only OCA. It can be taken alone if intolerant to Urso. Fortunately I’ve never had the itch or any other symptoms. OCA brought my numbers down nicely. Will you be taking OCA?

Sandymh
Sandymh in reply to gwillistexas

Hi. Sometimes I think should I try the Oca, but then my fears about it take over, so I really can't decide whether to or not.

gwillistexas
gwillistexas in reply to Sandymh

What do you fear? It has done great things for many of us. I’m not sure if it has injured my liver but I’m praying not. 🙏🏻😊

Sandymh
Sandymh in reply to gwillistexas

I've just looked up Ocaliva and can't see anything positive for me reconsider trying it. I guess I'll have to suffer the itching until Questran comes in again

Sandymh
Sandymh in reply to gwillistexas

I'm now considering CBD oil which is now legal in UK and will speak to my consultant about it at my next appointment in March.

gwillistexas
gwillistexas in reply to Sandymh

Best wishes😊

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