Luckily, I don’t have IBD or UC at this point.
Thanks again for so thoroughly sharing your study. For some reason I am just now seeing your post on the phase 3 study.
Have you heard anything new since your last November post?
“How beautiful the feet are of those that bring good news…”
Mark R.
Hi MarkR
Just curious…what sort of updates were you interested related to the trial?
If generally trial related…I might be able to answer as I was on it too.
The trial is closed to new participants and now most participants are done the blinded study. Study participants were offered two years of the drug afterwards (open label).I have been on cilofexor now for just over two months. I think I might have been on placebo beforehand.
From my experience, it is too soon to say. I haven’t been feeling great a month following taking the drug. For me, nausea and some URQ ‘pressure’ and a bit of discomfort. Of course, this might not be a true side effect but just a manifestation of this unpredictable disease
Here is a link to the details regarding study dates FYI
Hello! This is my first post. My husband (dx UC in 2000 and PSC 2019) has been in Cilofexor trial for over a year and is currently taking it during open label period. Well yesterday he got a call from the investigator that the trial was ending and he should stop taking the drug immediately. The study coordinator did not have more information so we are waiting to hear back from the doctor. Has anyone else had this experience? We feel that this med has been really really helpful and his labs have been great and minimal symptoms since taking so feeling a bit shocked to be asked to stop taking it.
Yes, unfortunately I received an email two days ago, telling me that open label had. abruptly ended, and I was instructed to stop taking the medication as well.
In the email, it said that there wasn’t any safety concerns, but that " *for reasons not related to the safety of the study drug, Cilofexor - to terminate the study effective today. Their decision was based on what they deemed “futility” of Cilofexor in treating PSC".
I am extremely disappointed as well, since like your husband, I really felt I was getting benefits from taking the drug, and I was very hopeful that, since they extended the study to open label, that perhaps they would seek FDA approval.