PBC itch

[Rozm2004]

Hi

I have PBC for past 4 years, non responder to urso but still take with bezafibrate.

My Alk phosphate are always abnormal at around 400-500 and I’m positive AMA

I have unbearable itch but as well as that have now been diagnosed with rare skin condition called Darier disease

I was prescribed high dose of prednisone for my skin and my liver itch and skin disease cleared up dramatically and the first time ever my liver enzymes returned to a normal level

The steroid course was a short one for my skin and as I tapered down the itch returned severely but what was scary is my alk phosphate jumped to over 1000, I was admitted to hospital and had a biopsy on Monday just awaiting results 🤦‍♀️

I can’t sleep with itchy skin and have tried everything I just wondered if anyone has ever had a transplant for just the itch !! I know it’s drastic and I have read that some people do just curious to find out

Thanks 😊

[TracG]

So sorry you have the unbearable itch. I am a 57 year old female and was diagnosed with PBC in 2005. I am similar to you my Alk phosphate ranges from 400 to 650 and a non responder to Urso but have been told to continue to take it as it helps to protect the liver although I don't know to what degree. I had severe itching for approx 5 years. For years I couldn't find anything to elevate it as different things help different people. I will say I have found using oil based soap like olive soap and Dermol moisturiser lotion cream which can also be used in the shower can make a big difference. Vitamin D levels can also have an impact. Worth getting checked. I moved to a hot country and very rarely have any itching. There are great people who post on here so hopefully you will get more advice. Stay strong 💪Good luck 🙂

[Rozm2004 in reply to TracG]

Thank you so much for your reply I feel like I have tried so many things but I have a scan on Sunday and seeing my consultant Monday hopefully will come up with a new plan and biopsy showed active PBC which is good there was nothing else !! Xxx

[Larrysgirl]

I'm sorry you are itching so badly. I was in the same position just a few months ago. The doctors ran through all the usual meds that should have helped but didn't finally they landed on zoloft. I take 50mg but can increase if I'm having a flare up. I has helped SO much. I found that I still wasn't sleeping very well and looked into something to help with that. I found Smart Sleep by equip nutrition. I went from having about 2 hours of broken up sleep a night to 7 almost every night. These 2 meds alone have changed my life immensely. I hope you find relief soon. Blessings, Anni

[Rozm2004 in reply to Larrysgirl]

Thanks so much for your reply I will be seeing my doctor on Monday and will speak to him about this many thanks for your support Xxxxxxx

[Larrysgirl in reply to Rozm2004]

You are so welcome Please keep us posted on your updates.

[CGPB]

Naltrexone is used for PBC itching (off-label use) and helped me greatly when I was about to go crazy. Ask your doc about it. Best wishes to you.