hello all, hoping to get some help as I seem to be running out of treatment options and coming to a dead end with suggestions from my doctors. I was diagnosed with PBC 3 years ago at the age of 25. I presented with extremely itchy skin and low energy and was found to have Stage 2/3 PBC. I was prescribed urso but quickly found it made me feel sick when I took it and also made my itching worse. I was started on questran to help with the itching and while I was hopeful it worked in the beginning, it didnt me much relief. From there I tried rifampin and sertraline both of which did not work. My doctors then prescribed naltrexone as thats known to help most people with itching. Unfortunately I had a terrible reaction from the naltrexone causing a trip to the Emergency Department and having stroke like symptoms due to the medication.
It's now been 3 years since my diagnosis, multiple medicines later and i am still having debilitating itchyness. I go multiple nights getting only 2-3 hours of sleep to the point of feeling delusional, sick, and having to call out of work. My skin is covered in scapes, broken blood vessels, and scars and its honestly embarrassing. My doctors are unsure why I am not responding to the medications but know that at some point we need to get my liver enzymes down and address the itching as its really affected my quality of life.
As of today my doctors would like me to start fenofibrate, a medicine normally used to treat high cholesterol but that has also been shown to help with itching in PBC patients. While I am extremely hopeful this will work, I am also nervous it wont and unsure of what that means going forward. When I asked my doctor today steps going forward if this doesn't work, her response was maybe it was time to get the transplant team involved. Do people get liver transplants for itchyness alone? I guess my numbers really haven't gone down since diagnosed so continual damage has occurred but I just wasn't expecting to hear "get the transplant team involved." Sometimes I have a hard time wrapping my head around this all as I feel like 28 years old is too young to be going through this and I am an otherwise healthy person. I eat healthy, work out regularly when I have the energy, and generally try to take care of my mind and body.
I've done some research and wasn't sure if anyone had tried plasmapheresis to treat itching or phototherapy? I feel I do the best I can to keep my symptoms under control; taking cold showers or using lidocaine or cooling lotions but getting to the point where I am unsure of what to do.
Sorry this was so long winded. Any and all suggestions are welcome. Thank you!