If I get past the screening phase I may be participating in this drug trial. It is aimed at people between 18 and 75 who have a PBC diagnosis with raised levels of ALP that have not come down using Ursofalk (my ALP at last blood test was 730 for example). You need to have been on a stable dose of Ursofalk for the last year and have these raised ALPs. If this sounds like you they are still recruiting at spots around Australia. It is also being conducted in the USA.
If you google clinical trials NGM282 it will come up. I am doing this at POW in Sydney. Will let you no how it goes. As with a lot of drug trials there is a placebo as well so I have a 2 in 3 chance of getting the drug....but you've got to be in it to win it and even if you don't, it's for the good of everyone else.
Regards
Skippy
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skippydownunder
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Its encouraging to hear of other new treatments for PBC being developed. I wouldn't qualify for this trial at this stage but I am very grateful to you and others who can and do take part in current research to help us all in the long term.
All the best
Puddles
Hello skippydownunder.
Well currently though been diagnosed with PBC since Dec 2010 and taking urso, my ALP has come down though odd time it has also gone up slightly but my latest blood results showed me to have a drastic reduction compared with the previous one 6 months ago. So I wouldn't be a candidate for participation if this was taken to a wider field like the UK where I am. I did post yesterday in reply to someone's asking me what my latest blood results were and it is on this site. It was good. I seem to recall that back at the start of November 2010 when I had another repeat blood check and at the same time the antibodies which gave diagnosis of PBC (I was symptomatic at the time with itching and back then fatigue too) I think my ALP had reached around the 500 mark, never been higher in the 4 1/2 years now I have been undertaking blood checks as I started to itch early 2010.
I do think that yourself you reach a certain point that certain things are worth giving a go regardless and for you at present this is the time and in doing so I wish you all the best and would certainly like to hear further as you progress with this.
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