Hello everyone, 2 issues I'd appreciate help on please. I saw the consultant on Monday who confirmed I am a non responder to urso. He stated i am a long way off a liver transplant but they need to get me better treatment to improve my quality of life and hopefully prevent the need for a transplant in the future.
The consultant spoke of considering participating in a clinical research study to see if this experimental drug can slow down the Pbc. The medication used in this research study is called FFP104 that plays a central role in adjusting the immune system.
My questions to others on this forum are: are any of you non responders too? (It feels isolated here 😥). Are any of you on this trial? If so, how are you doing? Are any of you aware of other treatments I should consider? The consultant mentioned over holing acid but felt it aggravated the itch and I don't want that again. I did participate in the lumena trial and felt it reduced the itch, however the results overall are not conclusive the consultant informed me and I don't know what's happening with that (I'm no longer on it and the itch hasn't come back as fierce as it once was).
Any advice/ideas welcomed