Just a year post liver transplant and my life is being governed by relentless itching.
My docs know about it and have given me antihistamines and colestyramine all to no avail. In fact it’s getting worse.
Just wondered if there’s anything else available that could help. This is my first ever post here btw.
Thanks
Welcome PJmars, I personally am not familiar with the itching scenario, thank you God, but I know there are many others on here that most certainly are.
I for one welcome you to the best site ever! This site will feed your soul.
Both PJmars and I go back a while now.
I met PJMars in the queue in the local hospital, he was my very first contact with anyone else with this disease. Hopefully if the story is shared, others will like Pj as much as I do.
Welcome my friend.
Jaycee
Hiya Jaycee, and thanks for the welcome xx
Hi,
I itch like crazy too. My Dr prescribed fexofenadine 180mg and it has worked quite well. Hope this helps. Please take care of yourself Lynne
Hello PJ, I'm sorry for not replying sooner, and I'm sorry your thread hasn't attracted more comments from others. The following is just some information of the possible cause of itching post-transplant that I have discovered, and this is for information use only.
Fortunately for me, I never really suffered any such complications post-transplant. The only issue I had was a kink in the inferior vena cava, which sorted it’s self out after about three months. Certain bits of plumbing (as I like to call it) can become twisted or squashed during the transplant procedure as the donor liver may not be an exact fit.
I understand there is a condition called, Cholestatic pruritus and this is a term used to describe itching caused by liver disease. Itching can occur when there is poor bile flow within and from the liver (cholestasis). There are some liver diseases in which itching can be particularly troublesome such as progressive familial intrahepatic cholestasis (PFIC) and Alagille syndrome.
Poor bile flow leads to high levels of bile acids in the blood stream. It is thought that these bile acids lead to itching. Jaundice is not always present in people with pruritus. Itching is usually felt all over the body but most severely affects the palms of the hands, the soles of the feet and the upper part of the body (the trunk). The itching may come and go in phases or in different seasons.
I also understand that certain types of Immune system suppressants such as Tacrolimus (Prograf) can cause server itching. This side effect is considered as a serious side-effect: drugs.com/sfx/prograf-side-...
I was telling Jaycee earlier, that during my RAF days, I contracted an attack of Scabies. (for those who might not understand, this is a little burrowing mite that gets into the skin and lays its eggs). The body’s immune system tries to attack this invader, and in doing so responds by giving you a terrible all over body itch. The only way I could get any relief, was to take a long warm bath. I only mention this as I can totally empathise with the itching issue.
I would contact the transplant co-ordinator and explain your symptoms. Sometimes a normal GP can feel a little out of their depth when it comes to post-liver transplant situations.
So, I’d play safe and call the co-ordinator, after all this is what they are there for, and hopefully you’ll get this sorted.
I sincerely hope this helps.
Best wishes.
Hi Richard
Thanks for your very helpful reply and in particular your empathy 🙂
Apparently I’ve been diagnosed with,
Intrahepatic Sclerosing Cholangitis.
Which I’m told is possibly due to bile duct graft problems. I’ve also had numerous ERCP procedures in order to improve the bile flow; stenting and restenting my bile duct, passing balloons in and around accessible parts of my biliary tree.
Initially these procedures afforded some relief from Pruritus but times of relief lessened.
I’m currently stentless and like the hospital would agree another procedure might be pointless.
My bilirubin levels are relatively normal and so are other enzyme levels so not sure why I’m itching at all really.
Other than that! Can’t complain really as due to cancer I’d be staring at the inside of a wooden overcoat for sure had I not been lucky enough to receive my new liver 😁
Thanks again for replying 👍
Hello there, I suffered horribly with pruritus ( I think that is the correct spelling! ) and eventually after months of searching was told about aloe Vera Gel. For me the relief from itching ( I literally made myself bleed ) is almost indescribable, Cooling,soothing, antiseptic, moisturizing etc just what I needed. If you want to try it you will find it in most chemists, or places like Super drug, Boots , etc it,s readily available. Try and get the Organic version, Aloe vera Gel, the make I use is by Aloe Pura, but I,m sure there are others. Best wishes, I really sympathise. X
I really don't want to pour scorn on other people’s advice, but I think a word of caution might be advisable. Aloe Vera, and other herbal treatments can interact with other medication. This can cause terrible side effects. Aloe Vera is believed to heighten the body’s immune system, and may well conflict and interact with the tacrolimus.
I would most certainly seek professional advice before going down this road:
bpspubs.onlinelibrary.wiley...
Cheers Richard 👍I’ll check that out with admin tomorrow
My PBC body is VERY reactive against Aloe Vera. It helps me to use Aveena body wash, (it has oat oil in it), and Waitrose own-brand baby massage oil, also with oat oil in it.. I declare no financial interest, just the wish to share what works for me... 
Itch is my worst symptom of PBC and as a last resort consultant prescribed naltrexone 50mgs x 2 daily which helps but does not cure, I have just been referred for plasmapheresis to try and tide me over n cope with the worst 9f the itch until my transplant happens, you have my upmost sympathies because I can and DO deal with all the other symptoms of stage 4 liver disease but the itch drives me insane, hope the medication works for you xxx
Itchy
Itchy night 
Terribly itchy skin
Itchy skin
