I have been accepted into a clinical trial and will be starting tomorrow. This is the third phase and is a blind study. Feeling a bit apprehensive ....
Diagnosed and have been on URSO for 20+ years. Had good results until a couple of years ago. Specialist decided I needed to add OKA to see if the combination wold help. Had a good response at the beginning but levels started to rise again after about 6 months and it was no longer worth putting up with the dreaded itch (no itch before or after the OKA). So here I am about to try something else - concerned that it won't help or that the itch comes back, the fatigue gets worse etc
The one benefit is that I'm now attending the liver clinic in Toronto and the staff is fabulous. My gastro responds to emails and has even called me when I had the issues with itch. Much better than my prior specialist who really didn't seem to know too much about PBC.
They have also asked me how much I want for an allowance , kind of weird since I thought they just provided a set amount. Any idea how to calculate this other than travel costs?
Thanks for listening
Written by
kat750
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I tried to get in on this trial. My ALP isn't above 180 so I was rejected. Disappointing, as I do have early fibrosis and have tried OCA which I couldn't tolerate. So, unfortunately I have only URSO which I'm not responding to but they keep me taking it.
A member on here.. Kimphoebe is on the Seladelpar trial. You can private message her. The last time we spoke, she was doing very well on it. I hope all goes well for you.
I am currently on this clinical trial with my study group being Queen's Medical Centre, Nottingham. I have been taking the medication for about 8 weeks now and have had no problems - obviously not sure whether I am on the drug or a placebo. My fairly serious itching had diminished significantly with URSO and that is why I was reluctant to take OCA (which is why I was recommended for trial). The main advantage of this new drug is that it should not cause itching. In fact, the electronic diary I have to complete on a daily basis is really just focused on the itch. If anything, I think my itch has reduced even more since on the trial.
The main benefit of the trial (other than possibly helping others in the future) is that you are monitored very carefully - I have already had a couple of fibroscans which I probably wouldn't have been offered through my usual monitoring. Plus, even if you don't end up on the drug, when the trial goes into the 'long-term' trial, you will be eligible to have it prescribed. Personally, I think that's worth the slight inconvenience of the check-ups.
I’m currently on the extended part of phase 2, been on it a year now, bloods currently running normal. Hasn’t stopped fatigue but itching gone. I wouldn’t worry bout it because they will really look after you.
It sounds as if you're very happy with the care you're receiving now. Would you mind passing on the name of the liver clinic in Toronto? I was diagnosed 3 years ago but am concerned with my GI's lack of knowledge re PBC.
I hope your trial is successful and results in no more "dreaded" itch.
Thank you all for your kind words. I did start the study but no impact yet as it has only been a few days. I did get the schedule of testing and you guys are correct, they will be taking really good care of me with extended blood work, scans and I have also been assigned a nurse for all questions and concerns, so fingers crossed.
@Pdh121600 I am attending the liver clinic at Toronto General Hospital. I am assigned to Dr. Gideon Hirschfield but also see Dr.
Aliya Gulamhusein who is running this part of the study.
You may be interested in some of the discussions at this years conference in Toronto. They show on the You tube channel for the Canadian PBC Society.
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