Hello everyone, 2 issues I'd appreciate help on please. I saw the consultant on Monday who confirmed I am a non responder to urso. He stated i am a long way off a liver transplant but they need to get me better treatment to improve my quality of life and hopefully prevent the need for a transplant in the future.
The consultant spoke of considering participating in a clinical research study to see if this experimental drug can slow down the Pbc. The medication used in this research study is called FFP104 that plays a central role in adjusting the immune system.
My questions to others on this forum are: are any of you non responders too? (It feels isolated here 😥). Are any of you on this trial? If so, how are you doing? Are any of you aware of other treatments I should consider? The consultant mentioned over holing acid but felt it aggravated the itch and I don't want that again. I did participate in the lumena trial and felt it reduced the itch, however the results overall are not conclusive the consultant informed me and I don't know what's happening with that (I'm no longer on it and the itch hasn't come back as fierce as it once was).
Any advice/ideas welcomed
Written by
Rosie2410
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I was diagnosed 12 years ago at 38 and had a partial response to Urso for the first 7 years. However 5 years ago LFTs deteriorated dramatically, liver biopsy and fibroscan confirmed progression to stage 4 and my consultant recruited me into the Obeticholic Acid trial as I now fitted the criteria of non responder. The first year on the trial drug I was taking the placebo ( double blinded trial) and my LFTs, particularly ALP and GGT continued to climb. However once I was switched over to the active arm of the trial and commenced on 5 and then 10 mg of OCA my blood results improved markedly. The liver damage already wrought ( ie I have cirrhosis) cannot be undone but my Drs feel the disease process has definitely slowed down. To this end I would encourage you to participate in any trial which is suitable for you. OCA will hopefully be available for commercial use in the next year or so and will provide that option for we non responders that until now has been sadly lacking.
It is true that itching was a side effect for some on the trial ( I did not experience it ) but overall the results have been extremely positive.
Thank you Karaliz your reply is reassuring. I wonder why he wants to put me on this one now rather than try me on oca? He did mention oca but didn't offer it to me as a choice.
Hi again Rosie ( I'm in Australia, hence the delay !)
As far as I know the recruitment for the OCA trial is closed - that is certainly the case here - and it is not available to the public yet. Perhaps your Dr was informing you so that when it does come on to the market you will be aware of it. In the meantime the other trial certainly sounds worth investigating ?
I posted a link recently about OCA due to be fast tracked, meaning it should be sooner rather than later that we can take advantage of it.
Secondly, as things stand OCA isn't currently an option in the UK for all we anticipate it becoming available early to mid 2016.
In one of the trials, OCA did cause a raise in itch. That said, the prescription was too high. It was found that those who started on 5mg per Kg who then raised it to 10mg per Kg over so many weeks didn't have the same itch issues. The itch is an emotive topic and must be considered when looking at PBC treatments but we are hoping with this new prescrition strategy that any itch is minimised.
As far as non-responders go, dependent on which figures you look at there could be as many as 40% of people who do not respond to Urso, or UCDA. I am not sure, yet, that the figure is as high as that but it is certainly a significant figure. Hence, there are still multiple projects looking at different ways to address PBC and its progession.
I am not familiar with FFP104 but I am sure a little more info from you would clear that up for me.
Hi from a fellow non-responder. I am in the U.S. and am currently participating in a small pilot trial of Abatacept, aka Oreancia. Most non-responders, I have been told by the researchers and in reading studies, tend to be on the younger end of the spectrum for PBCers. The good news is that research and trials are being done, and many focus on non responders. Feel free to message if you want to talk.
Hi kgohn, thanks for replying. I'm in Birmingham UK. I will message you. I'm just on break at work and so not able to spend long on here at moment, thanks again
Hi i am also a non responder and i am now on nothing I am late stage 3 beg stage 4 with cirrhossis so unsure what i need to be doing now. I have told consultant, docs and anyone else that listens that i am willing to do trials but as of yet nothing. Good luck in the future x
Unable to take Urso because sides effects horrific for me. I have been on Integrative Medicine/Functional medicine, and use good CBD and Cannabis. Cannabis take itch away immediately plus healing at the sametime.
Don’t know what my numbers are at this are, but I have appointment tomorrow for blood draw. As soon as the result come back I’ll let you know where I am.
Integrative Medicine has been good to me. I do have good days and bad day of fatigue, but more good days.
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I am late stage 3 beg stage 4 with cirrhossis so unsure what i need to be doing now. I have told consultant, docs and anyone else that listens that i am willing to do trials but as of yet nothing. Good luck in the future x
To take or not to take Urso!!!!
Symptoms of non responder to urso
High billirubin 
Does anyone on here think that maybe the dosage per kilo for Urso is wrong and needs to be reviewed by those who do that? I do.
Pbc
