Hi, has anyone been involved in a drug tri... - PBC Foundation

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Hi, has anyone been involved in a drug trial? My consultant is keen for me to participate. Any info would be appreciated. Thanks Michelle

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MickeyMouse
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7 Replies

I am on the East coast of US. No trials here. I keep looking.

Hi MickeyMouse, do you know what the drug is that you will be trialling?

MickeyMouse profile image
MickeyMouse in reply to

Hi, I dont know if my consultant has a specific trial in mind. He is keen for me to participate due to no improvement of my LFTs on Urso and severe itching.

Karaliz profile image
Karaliz

Hi Michelle,

I hail from Melbourne, Australia and was recruited into the Obeticholic Acid trial December 2012. This aims to see an improvement in LFTS when taken in conjunction with Urso. It is a double blinded trial so neither the investigating doctors nor I know which of the three arms of the trial I am in. i.e there are 2 active arms- 5mg and 10 mg and a placebo arm.

Like you ,my consultant was keen for my involvement as I am part of a minority who has not really responded to Urso. Have been on Urso fo nearly 10 years since diagnosis at age 38.

My consultant and I suspect I am either on the placebo or OCA is not working for me as LFTS are slightly worse if anything !

However , trials are for the greater good so the final results are worth focussing on.

I gather I am only one of a handful of Australians on this trial as it had nearly closed by the time it made its way Down Under !! Mostly Europeans taking part I believe ?

Hope this helps a little, Michelle.

MickeyMouse profile image
MickeyMouse in reply to Karaliz

Hi Karaliz, thanks for the reply. It's a shame this trial is closed now as I also don't really respond to Urso. Fingers crossed that some good comes out of this trial and you were on the placebo. Take care.

Karaliz profile image
Karaliz

My sentiments exactly. Apparently the preliminary, smaller trials of OCA were very favourable so that is comforting. Which drug trial is your doctor wanting you to participate in ?

Take care and hope you're feeling ok.

MickeyMouse profile image
MickeyMouse in reply to Karaliz

I dont know. If there is one, it may be for the severe itching! Pleased to hear the preliminary trials were good. Keep me informed of the results of yours,Thanks.

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