itchy help. PBC diagnose questions- where do we go now

[ead0724]

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!

[Kate50]

Hi ead0724, lots of questions in your post and I’ll try and answer some of them for you, sorry you are having such a crap time, I know exactly how you feel, I have been in your exact position although a bit older, you can be transplanted for intractable itch with pbc but this is a last resort especially as you are so young, that’s what I was told initially, there are lots of things you can try, phototherapy I did this twice, was very time consuming involved strip to the hospital every day for 6 weeks, did give some relief but was quite short lived, plasmapheresis I had this treatment for almost 2 years and although it did not stop the itch it made life bearable, I had a transplant 2 1/2 years ago and finally I have no itch this is the only thing that has totally cured the itching of pbc, I really feel for you because I know how awful it is if you want to ask me any questions feel free I’m always happy to help, 🌸🌸

[Prettyeyes79 in reply to Kate50]

Hi Kate50

I’m doing plasamapheresis right now, weekly to help with the cholesterol number going down and the itching. It sorta helping with the itch but my concern mostly with this treatment is to lower my cholesterol so my bumps go away.

This might be a silly question but how did you shower when you have the catheter tube on your right side or left. I been buying the Johnson and Johnson shower plastic one but it’s getting expensive. Please help me, I trying to find a easier way to shower without getting my catheter wet

Thank you

[Kate50 in reply to Prettyeyes79]

Hi, I think maybe my treatment was slightly different, I had the plasmapheresis once a fortnight and it involved a big needle in one arm where you give blood and a small needle in the opposite hand, so the blood was taken out via the big needle and plasma removed, new plasma added then replaced via the small needle, the needles were removed at the end of the treatment so didn’t interfere with everyday life, sorry I can’t be more help 🌸🌸

[Prettyeyes79 in reply to Kate50]

Thank for the reply back. Are u living in the States or UK

[Kate50 in reply to Prettyeyes79]

I’m in the uk 😄

[Jude1]

I've been on Urso since I was diagnosed over 10years ago. Not sure what dose your on. I never had the itch but I do now. I'm on 150mg and feel ok ish. I think you need to talk to your G.P or consultant.

[Hidden]

I think your doctor made a very good suggestion to get the transplant team involved. We must remember there is no cure. Medications only slow down the progression of this disease.

[Dyfry]

Sorry you have to go through this. I completely understand what it feels like. My itch started to become unbearable about 4 yrs ago. I have been ursodiol since dx. About 9 yrs ago. I started the colestipol( cholesterol binding agent) and have doxepin and trazadone to take at night to help sleep 4 yrs ago. I have some good days but the itching has severly effected my life. Sometimes I'm up for days at a time or I stay up at night and sleep the next afternoon.. I've missed out on so many things. I generally don't leave my house for long periods of time. For fear and experiences of being miserable with itching. I stay home in the baggiest of clothes. I especially can't take wearing shoes and socks. Used to hate flip flops- now that's pretty much all I wear.. Sorry, I don't have any good news to share. Just want you to know your not alone. I have been looking into cbd oil. I'm in CA so I can get it with some THC. It's got to be better than all the pills every day. And drinking myself to sleep and for depression when I just can't take it anymore. I would definitely do a transplant if I had the option. I hope you find some relief soon....

[Starcat]

Try CBD oil, it’s not cannabis but is made from it, you can get cream and food supplement. You can get it at Holland and Barrett but also stronger versions on line,

[Melwoods]

I’m just like you had it for 2 years.

I’m currently on a trial for the horrific itch at Queen Elizabeth Birmingham but no luck

It’s changed me as a person and I don’t go out much socially due it.

They have mentioned plasmasis to me

Hope you get some relief soon x

[Mariandy]

Hi ead9724,

Sorry if you’ve been going through a lot hope your doctor could find the right medications for you.May I know which part of your body is itching?mine is at the sole of my feet and toes every night,I’m not diagnosed with anything yet but still waiting for 6 weeks for a repeat LFT test because my lAst result says slighltly above normal.did you have this itching even before you’ve been diagnosed?hope you don’t mind me asking.