Trial drug

[Vivaldii]

Hi all I am thinking of signing up for a drug trial for seladapar .......has anyone been on this trial?.....cannot tolerate urso......Any feedback appreciated xx

[4pjx__]

I do not have experience with this drug but I have heard they are having really good results from it. Honestly, I haven't seen or heard anyone say they were having bad results from it. It could be worth a try depending on your circumstances. Good luck and please do let us know what happens !

Pam

[liver-bird]

Don't know but praying it works well for you 🥰

[JaneAnderson1966]

Hi, I am currently on this clinical trial based at QMC Nottingham. I am only a partial responder to URSO and the team at Nottingham thought I would be a good candidate as I wasn't keen on taking Ocaliva (due to potential itching problem). I have been on the medication/placebo for a week now and had no problems. You do have to have a couple of assessments to see if you are suitable and be warned, they can take several hours. However, once you get going the visits get less regular. I just thought that participating in this study might help others in the future.

In terms of the personal benefits, you will be under the care of some of the best specialists in the country and you will be monitored very carefully. I have already had 2 fibroscans, ECGs, ultrasounds and plenty of bloods taken. I think I am due for 2 more fibroscans at least.

During this process, I also discovered that, despite a biopsy confirming AIH overlap, the medical team believe I only have PBC. The AIH was a misinterpretation of my biopsy. So, from my point of view, it's been positive for me so far.

One other thing, after the initial study, everyone who has participated can go on a long-term study that means you will get the medication until it has been approved.

Do what you feel is right for you but you can withdraw from the study at any time. Sorry, I feel like I am trying to sell you the clinical trial - just couldn't really see the downside.

Good luck.

[gwillistexas in reply to JaneAnderson1966]

I take only ocaliva. Please keep us posted. 😊