NEW PBC DRUG??

[WendyMarie]

My Gastro Dr. told me today, that there is a new PBC drdug that will be on the market within 2 years. She says it is supposed to be better than Urso, by slowing down the progression & also reversing liver damage. When I asked the name she said it has not been given an official name yet, on the chemical name for now. I was shocked. Does anyone know or have any info about this?

[Karaliz]

Hi WendyMarie,

I am on the trial drug Obeticholic Acid (OCA) which has shown great results in clinical trials for people like me who are/have become non responders to Urso. This is possibly what your Dr is referring to ? OCA is the first drug in more than 20 years that has real promise for people with PBC.

Karaliz

[Hidden]

I think you'll find that there have been other trials with regards to PBC. One for a drug for itching and also one for fatigue being trialled too. I know you can check online any current clinical trials for PBC online. I know in the UK you can use the NHS website.

There has also been a drug being trialled with the initials INT I think and some numbers following plus the other one that has been mentioned on here the OCA. (OCA is apparently another component of bile.)

My personal thoughts with regards to this OCA is that early trials have indicated that itching can be more of a problem and myself I already itch, usually at night. At the moment I am not sure if I would want to rock the boat so-to-speak as I am doing pretty well on urso at the moment. I think this drug if it gets to market stage (as a drug from initial set-up to marketing can be around 10yrs) will be given firstly to patients with PBC who are not responding as well to urso. I think the trial although a patient with PBC had to fit a certain criteria (two of certain conditions, ie been taking urso for such a length of time, abnormal LFTs, etc) and one was if there was a problem responding to urso.

If you check online with the PBC Foundations new site the Bear Facts is on there (not sure about back issues) but if you also check out the Liver North website which does nave back issues of newsletters, I have seen clinical trials on there as they publish anything ongoing in their newsletters too.

livernorth.org.uk/pages/fac...

[Karaliz in reply to Hidden]

The other drugs being trialled such as Rituximab are a significant way behind the OCA trial which has been going for some time and has proven clinical effective results in reducing ALP in particular. The results are significant enough to warrant the attention particularly when there has been precious little besides Urso for the past 2 decades. For those of us non responders to Urso it is an exciting development !

[Betonarme in reply to Karaliz]

Rituximab showed to reduce the AMA titer down to normal levels!

(can be seen here: karger.de/Article/FullText/...

But it needs much more trials.....it targets B-cells.

OCA is most likely to be the next treatment on the market....hopefully it helps many people.

[Rosie2410]

I agree this is an exciting development. I was on the trial drug re itching and it made a significant difference to the itch for me. To hear that this new drug slows down the progression of damage to the liver fills me with renewed hope that this disease will be managed better in the future.

[liver-bird]

There has been a lot of optimism about the new OCA drug which may be more effective than urso so this is good news for all pbcers although only those who don't respond to urso are getting it at present. I am reassured that there is a plan B if urso doesn't work

[nomorepies]

I know that obeticholic acid has been trialled, my consultant said they hope it is available in a year or so, people who are non responders to urso may benefit from it.

[donna01]

Haven't heard of it but glad to hear!

[rynick]

I was told by my consultant that new drug would be ready within a year!!!! As I suffer with really bad constipation on urso and had to come off it as nothing helped, he said the new drug would hopefully help and I should go back to see him in a year