Obeticholic

[Shazzamattaz]

I had my yearly appt last week because I can’t tolerate urosexdelic acid in medicine & tablet form, I’ve been a bit naught6 and not taken it for a while & was honest with the doctor. my new doctor wants me to travel up to London to kings hospital to try this new drug? Kings are the only ones who apparently do this, my blood results were not good last week, apparently my bile ducts are inflamed, something like that, also having an ultrasound end of month, has anyone else been told of this drug (see above) I have googled it today 😐😳😬

[Wass71]

Yes, I've done a trial for Obeticholic acid. It was a multi centred phase three double blind randomised controlled trial. Whilst on the trial the drug was approved by Nice. However due to funding ( it costs about 28k per year or there abouts), it can only be prescribed in specialist centres. I don't think just kings that will prescribe. But if that's your nearest specialist centre then that would be the one you'd be referred too. It has had good results for those with early stage Pbc, and is also used for people with Nash.

Read up on it and then you'll be able to discuss any concerns with the Dr's at Kings.

Best wishes

[Shazzamattaz in reply to Wass71]

Aw thank you for your reply, I’m a bit confused by the ‘ multi centred phase 3 blind bit lol! Well I did ask if this was the nearest place that does this drug, and kings are at the moment, I have stage 1 pbc but my liver biopsy was back in 2013, I told the dr I would never go through one again to see if it’s got worse as that’s the only thing you can do to see if it has, but as you know the biopsy isn’t pleasant, I will read up on it, I did google the drug couple of days ago, thank you for your reply x

[Alison2306]

Hi there, I too have PBC and live in Perth in Scotland. Im very fortunate that I am now on obeticholic acid (ocaliva brand name).

I still take my urso 1500mg daily and currently on week 5 of obeticholic acid and on the initial dose of 5mg.

To be able to get it I had to have another liver biopsy to confirm that it was solely PBC I have and not any fatty liver.

I’ve put myself on a google ban as you can scare yourself. So far so good and bloods had come down in first week on the drug. (Lowest in 4 years)

I have in my consultant words an aggressive form of PBC and despite taking my urso and loosing weight (almost 5 stone) I’m now classed as cirrotic.

Childs A compensated - i feel ok though. So focusing on the positive. Side effect is the itching for me started at around 3 weeks in.

I’m trusting of my doctors though and I’ll do whatever to slow progression down I’m only 34 and have 2 girls age 6 and 8.

Take opportunity to try i feel better more ‘fresh’ and normal only downside is itching but it comes and goes and joint pain just knees and hips (didn’t have any before taking drug).

Good luck xx

[Shazzamattaz]

Hello Alison,

Thank you for replying, I keep saying the same lol too that I will not google but I do 😬🙄 that’s good news about your bloods well done 👍🏻 I’m so sorry to read you have an aggressive form, mine is mild, but I’ve too lost weight, I was weighed the other week it came to 7 stone 6 I was so upset, I’m petite anyway, dint need to lose it, been trying for years to put weight on, I was 8 and a half stone for years, but have to say since having this it’s not been good but I do eat well, love my food 😕

You have 2 girls too, where as I don’t have children, so I know it must be so much more worrying for you, ive has the itching too, but it seems to have disappeared, I have an ultrasound end of month so we will see what that says, hope you’re ok too and good luck too with it, xx