Intense pruritus following liver transplant - diagnosed with hepatic cholestatic. Any help please?

[KateG94]

Hi,

I received a liver transplant back in December 2022 and recovery was well for the first four months however around end of April I started suffering with pruritus amongst other symptoms i.e. acid reflux, fatigue etc. and following x rays and scans, the Consultants advised it was due to strictures in my arteries and bile duct and gave me oral medication. I then had a stent fitted to help the bile salts flow through better however the past 2 months have been hell.. I don’t get any relief from the itching now and believe the stricture has completely closed. I am struggling daily and nighttime’s are horrific. I manage around 3 hours sleep max. I try to nap during the day but the pruritus is so intense I simply get no relief from it and I’m losing my mind. I have tried all creams you can think of, cool showers, fans in my room at night, tried my best to not itch; the list goes on. I have undergone and passed the assessment to be placed again on the donor transplant list as the consultants have advised this is the only route we have now. I appreciate I could be waiting a month or it could be a year and I wonder if anyone can relate to my current issues and have any suggestions or tips on how i can get some relief?? Again I’m taking medication - ursodeoxycholic acid and colesevalam but this is proving useless now!

Any and all responses are welcome and appreciated!

thanks in advance

[BritishLiverTrust8 Moderator British Liver Trust]

Dear KateG94

If you would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)

Best wishes

British Liver Trust

[Readlots]

Hi, I have no idea if this would be appropriate post transplant, so you would have to check with doctors, but PBC patients can be prescribed Colestyramine for the itch. Might be worth asking. It’s sachets that you dissolve in liquid. I understand that it doesn’t taste great so people play around with disguising the taste but it seems to help.

[KateG94 in reply to Readlots]

Thank you for your reply! Sadly I have tried the sachets and whilst unpleasant I did persevere taking them but they had 0 effect. I have seen the consultant today and we have discussed further options so I have come away with new medication, which hopefully works some magic!

[Readlots in reply to KateG94]

I hope the new medication works for you and let us know if you’d recommend it

[Ubwa]

hi, I am in the exact same situation. Only thing that stopped the itching was rifampicin

[KateG94]

oh really? When did you start the medication and did it work straight away?

[Ubwa in reply to KateG94]

Took a day or two but worked 100% . Before that I was on Colestyramine and it stopped working at all. I am an in patient however, and they have to watch your tac levels closely as it interferes with them.

[Dotyy]

Hello Kate, I really sympathise with the itch it can be relentless. Secondly after my liver transplant in 2010 three months later I became unwell itching, feeling sick , fatigue etc. I had Ecrp, and it was discussed wether I need a stent to open my bile duct. I think in my case it was twisted and badly blocked.

I ended up having a bile duct reconstruction. Has this ever been discussed in your case? I’d imagine they would have as another transplant is of course an option but one they surely decide carefully. The bile duct reconstruction seems to have been successful. I really do wish you all the very best and I hope you have a plan soon. Lorna.