Itching post-transplant

[PramirJC]

Hello all!

Just wondering...have any of you experienced intense itching after liver transplant?

Thanks so much!

[TT-2018]

Yes, it was absolutely terrible before the transplant and my shins, in particular, were bad.

After the transplant, I had blotchy skin and itching in the same places. My Heptologist put it down to the mycophenalate. Two years later, I still deal with it by using Dermol in the shower, Aquadrate cream twice a day and Fenafaxadine in the evening. All prescriptions and after discussing the situation with my GP. It would definitely be worthwhile for you to discuss it in your next clinic and with your GP.

[PramirJC in reply to TT-2018]

Thank you so much for replying....I appreciate it! I will bring this up with my wife's GP in next visit! Her itching is her main complaint and it drives her crazy. It helps you quite a bit?

[TT-2018 in reply to PramirJC]

It took a while for things to settle down but touch wood, my regime seems to be doing the trick.

I wish your partner the best and a positive outcome.

[PramirJC in reply to TT-2018]

THANK YOU!!!

[Hidden]

Good morning PramirJC,

With any new, persistant or worsening symptom it is worth seeking medical assessment, particularly with a background of liver transplant.

Your transplant team or GP can assess you and see if any treatment or monitoring is required.

I am sure our forum members, like TT-2018 , will share their own tips on what helped them - but as suggested, be sure to check with your own doctor prior to commencing any new treatment.

Take care,

Trust9

[PramirJC in reply to Hidden]

Yes, thank you! We have been in constant touch with my wife's doctors and they are too well aware of her itching, but just kind of shrug and tell her to use Benedryl which only helps because it puts her out. That is not a solution. It's so frustrating. They don't seem to be too concerned with anything that isn't life threatening.

[AyrshireK in reply to PramirJC]

Has she had recent blood tests? Post transplant you can get complications of blockages in the bile duct leading to a rise in bilirubin again and this can cause the maddening itch. It's shocking that that no one is following this up with a post transplant patient.

Katie

[PramirJC in reply to AyrshireK]

She is in constant communication with her doctors and yes, her last lab work on 9/4 which is coming back looking good. Her transplant came with major complications. She developed MRSA pneumonia one week after her transplant which nearly took her life. Since then she's had multiple sepsis infections and now has tubes in her liver for drainage to try to prevent the infections. She has been in the hospital (much of it ICU) and then SNF for the past six months. She's returned home just this past week. So, now I'm finally seeing the itching for how bad it is. I know she's been complaining about for some time and we originally thought it could be a side effect to the Hep C medication which she stopped a couple weeks ago. But her itching is not improving after being off of it. The doctors just shrug and tell her to take Benedryl and don't seem all that concerned about. Thank you so much for responding!

[TT-2018 in reply to AyrshireK]

Actually, post transplant, you are blood tested everyday and discharged when they feel that everything is going well. You then return to the transplant clinic every week, which firstly involves a blood test. It is difficult because it can be a long journey. You also have to remember not to take your Tacrolimus until after the test, because it de-ranges the blood.

[Hidden in reply to PramirJC]

From a practical perspective, cool loose natural fibre clothing and keeping her skin well moisturised may help.

Often a tepid shower or bath before bed can also provided a little relief.

I hope she feels better soon,

Trust9

[PramirJC in reply to Hidden]

We will try all those thing....thank you!!

[FlyingArrow]

Hi Pramir

I'm sorry to read your wifes suffering with the dreaded itch !

Sometime ago a TP member wrote that he stored the odd towel in the fridge and found it cooled his itch down when placed over!

I cannot promise it will work for your wife but its worth trying anything!

All the best!

FlyingArrow x

[PramirJC in reply to FlyingArrow]

Great idea! Thanks so much!

[FlyingArrow in reply to PramirJC]

My fingers are crossed it helps x

[Catlady1972]

My itching was very intense when I was first diagnosed with NAFLD I would drive me insane to the point I was crying in frustration. Before my transplant I managed to get the itching under some control with a cream and a tablet. Now I have had my transplant my itching has reduced a great deal but not totally gone, I’m sorry your itching has not subsided 😕

[PramirJC in reply to Catlady1972]

Hoping it starts subsiding soon. Her GP had no idea what to do for it. I think it's time to change her GP.

[Catlady1972 in reply to PramirJC]

Antihistamine 1 a day and the cream I use if I need it is Eurax cream, both can be bought over the counter but do please check with your health care professionals first as you know we are all different. 🙏🏼

[Hidden]

I take cholrstyramine for itching.before using it my itch was extreme,awful scratch till bleed.if you consider...talk to your wife doctors.hope it will help .i wish her to be well!!

[PramirJC in reply to Hidden]

I will bring this medication up with her doctors....thank you so much!