Clinical trials for pbc

[Godfrey1]

Hi, as a non-responder to URSO I am to start on a clinical trial program. Any advice or an idea of what to expect would be very much appreciated. Thank you 😃

[skippydownunder]

I am on a clinical trial for NGM282 as I don't respond completely to Ursofalk. Give myself an injection in the stomach each morning and have blood tests monthly and an ECG at regular intervals. The hospital visits are once a month and that is about it. What Trial are you going on? I am in Sydney by the way. Where are you?

Skippy

[Godfrey1 in reply to skippydownunder]

Hi Skippy and thanks for your reply. I'm in the UK so it may be different here. Has it helped at all?

[skippydownunder in reply to Godfrey1]

The ALP has dropped to 349 which is the lowest it has been but some months it does go up. It is very unpredictable. The ALT and AST tend to rise and fall with the ALP. Bilirubin is up to 29 however and has risen since stopping the methotrexate. Before the trial it was down to 15 at one point from a high at diagnosis of 76. So this is week 28 coming up on 14/4 so will see the next lot of numbers.

Skippy

[Karaliz]

Hi Godfrey,

I became a non responder to Urso after partial response for 7 years ( diagnosed nearly 12 years ago.) Recruited into the OCA trial which has shown promising results, particularly in reducing ALP and GGT. Apart from taking the trial drug every day , I see the trial doctors every 3 months for blood tests, have an ECG and physical examination 6 monthly and fibroscan yearly.Hope this helps a little although the guidelines for each trial will vary depending on what is being trialled.

Good luck from Downunder !

Karaliz