Liver disease itching: What helps?

Hello. I sympathize with those of you who are dealing with post transplant itching. I am six months post and my chronic itching began around two and a half months. It was horrible!!!!! I was admitted to the hospital on two separate occasions it was so bad. Post transplant itching is a major sign of issues with your bile ducts. I had every test imaginable and they could not find the culprit. Then my bilirubin went up to 12 and the itching got even worse and landed me back in the hospital again. So this is what my team and I have come up with to help with the itching. I take Ursodial three times a day. It helps to bind the bile salts. I also drink cholesyrine. It is used for high cholesterol but also has proven to aid with those who have itching. I am on hydroxyzine and Benadryl every six hours. Normally one would not take these two drugs together but it has helped me tremendously. I also take Zoloft which is an anti-depressant but is used for itching as well. Gabapentin was added recently to help with the pain of itching. This is a lot of medication and I don't like taking all of it. However, the itching was so bad for me I would scratch until I bled. On my own I have come up with using Sarna lotion that has the menthol and camphor in it. It works as a cooling agent. My Dermatologist advised me to keep it in the refrigeration so that it is cold. So I use the Sarna lotion and mix it in my hand with a little bit of Benadryl gel for itching. I apply this first to my feet and then put on thin white socks. I then just work my way up my body applying it all over. All of this is what helped me. My itching was so bad that I felt like I just simply couldn't deal with it anymore. I pray that this information will help and that you will feel some relief. Also, stay busy doing something all of the time. The itching is worse when you are not active. Feel free to message me anytime.

I received a diagnosis of alcohol liver disease, and want to learn more on the subject. Can you please direct me to the appropriate group.
Sarah.

I had terrible itching for several months pre transplant, and even worse itching post transplant, maybe 2 or 3 months. Now I can’t remember. My transplant was 13 months ago. What helped me endure was the over the counter lotion Sarna extra strength with menthol, moisturizing a lot with regular lotion, and I also took sleeping pills (trazodone, and then admittedly cannabis gummies which I can purchase legally where I live- my liver team ok’d this)- I really needed help to sleep so I would wake up less with panic itching. I can’t remember when it stopped completely. I also literally had to scratch my itches which were mostly out of reach on my back (how unfair!) so I would line up my boyfriend, my mother, sister etc for back scratch sessions! It makes me laugh now but it was completely unfunny then. Some say benedryl helps, even small doses but I didn’t try as I don’t like how I feel when I take it. Good lotions, good sleep, deliberate help to calm you or scratch your itches! Oh and also, drink lots and lots of water.

I had some itching pre-transplant but it has gotten a little worse afterward. Not intolerable just inconvenient. Any remedies are greatly appreciated.

It's been a while - and I am wondering if anyone has any updates related to your itching?
@gerryp, @btg, @ugadawg1067, @crystalfaye, @katebw, -Have you found any relief? What is working for you?

@patrickski98 - What is your experience with itching? Is it new or ongoing?

I am so very sorry that you are itching so bad!!! I have it too and am almost five months post liver tx. I know it is brutal on you. I hope your team figures out what is going on to cause so much itching My team has been unable to do so. I’ve had every type of diagnostic test available including labs, cultures, and an ERCP where a stent was placed. Recently I was in the hospital (again - my third stay in two months) and the stent was removed. Everything looks ok but I continue to itch horribly. I am on so many meds to try and help but most of them make me feel and act like I am intoxicated.

Have you been put on any meds? I have tried many things to alleviate the itching. Ice packs are great and do help . Just make sure you place a towel between your skin and the ice pack. I have tried many lotions and creams (Sarna with the camphor and menthol, Benadryl itch stopping gel, calamine, cortisone 10, cerava. None of these takes away the itching but I have found that if I mix the Sarna and Benadryl gel together that has some cooling effect.

I’m curious. Do your feet and hands feel like they are burning?

What are yo using to help?

Welcome back, @ugadawg1067. I'm sorry that you're still dealing with itching related to cirrhosis and not finding relief.

To help connect you with other members, like @jeanne5009 @gaylea1 @crystalfaye @hello1234 @gerryp and others, and to read some of their helpful tips, I moved your post to this existing discussion:

- Liver disease itching: What helps?
https://connect.mayoclinic.org/discussion/liver-disease-itching/

Itching associated with liver cirrhosis
I itch all over at nighttime but have tried every cream and prescription that has been prescribed to me. What does anyone else do for this matter!!!

Hi Crystal. I had terrible itching for about 2 years. I found that ice packs helped relieve the back itching. My wife purchased large ice packs on Amazon, and I would sleep on them with a towel between the ice-pack and my skin. Sarna helped somewhat. I preferred the “sensitive skin” version. Benadryl did not really help me much - but everyone is different, so you should definitely try it. Also my wife bought me plain white cotton gloves from Amazon, that I would wear at night to prevent myself from breaking my skin with the incessant itching. It was awful. But the first thing I noted post-liver transplant that my itching had disappeared. Hopefully you can find some relief.

Crystal, I am concerned for your quality of life with your uncontrolled itching. Has anything that you have tried given you at least a temporary relief?
I think you mentioned a possible stent - have you had any response from the doctor with regards to this? Is this still a potential treatment?