Liver disease itching: What helps?

Posted by jeanne5009 @jeanne5009, Nov 26, 2018

Does anyone have info or treatments for itching? My scalp and lower back have a very itchy rash. Tried ointment shampoo, antihistamine and steroids...wont go away. I am Stage 4 liver cirrhosis. Dermatologist and PVP are stumped.

Interested in more discussions like this? Go to the Transplants Support Group.

@ugadawg1067

I cannot seem to control the itching when I lay down at night. I have tried every cream or medicine that my liver doctor has prescribed. I am on the liver transplant list. My legs burn or seem to “ crawl “ when I try to sleep. Anyone experienced these things??

Jump to this post

@ugadawg1067, Welcome to Connect. I requested that your post about liver related itching to be added to this discussion where other members have shared their concerns and also and also some solutions that they discovered to be helpful to them.
I am a transplant recipient and I also had severe itching as my liver disease progressed toward transplant.
My transplant, in 2009, was due to Primary Sclerosing Cholangitis (PSC) and hepatorenal failure. I remember that my itching began near the time that I was referred to the transplant department by my local GI who had managed my care for nearly 8 years. And I remember the terrible itch! The door frames in our house became my scratching posts - much like a bear uses a tree. I fortunately never broke any skin as I had read that some patients do.
I am so very sorry that you are having itching. I assure you that you are not alone.
Here is a list of some things - remedies - that I tried:
- Over-the-counter antihistamine
- When my itching became severe, my local GI wrote a prescription for Chlorestyramine, a bilebinder and that gave me the relief I needed. It was a powder that I added to a glass of water and drank.
- topical relief – I got some relief with Sarna anti itch lotion. It is an over the counter lotion.
- a warm bath in Aveeno bath treatment for itchy skin was helpful and soothing, but getting in and out of the tub, quickly became difficult as my body became swollen with ascites.

I don't remember when or why, but sometime during my pretransplant time, my itching eased as other bothersome symptoms took over.

Here is another discussion that has more itchy solutions:
Kidney & BladderItchy skin
https://connect.mayoclinic.org/discussion/itchy-skin-2ee1a9/
I want to suggest that you read thru this discussion and the one that I have posted. I also want to let you know that your questions and comments are welcomed anywhere. If you want to direct a question to any particular member, use their @name.

I don't know if there are any newer remedies available. I look forward to hearing from some members with any updates for itchy solutions.

@ugadawg1067 How long has your itching been going on? Have you tried a warm bath before bed?

REPLY

I cannot seem to control the itching when I lay down at night. I have tried every cream or medicine that my liver doctor has prescribed. I am on the liver transplant list. My legs burn or seem to “ crawl “ when I try to sleep. Anyone experienced these things??

REPLY
@gaylea1

I took lactulose and rifaxamin and that lessened the episodes in frequency but many times I woke in the hospital. Loss of memory is what got me the most.

Jump to this post

Hello. I was diagnosed with liver cirrhosis this year. Just finished my transplant workup a couple of weeks ago. I'm going back Monday Jan. 28. It was recommended to me that you would be a good person to talk to. Thanks.

REPLY
@mathewsw

Ask your doctor about trying Tremfya.

Jump to this post

@mathewsw, I would like to welcome you back to Mayo Connect. I hope that you are doing well.

I had itching before my transplant, and so I know that members will appreciate reading your post. I had never heard of the drug Tremfya, so I did a quick search and learned that Guselkumab (Tremfya) is an injection is used to treat moderate to severe plaque psoriasis in patients who may benefit from receiving phototherapy (ultraviolet light treatment) or other treatments. Plaque psoriasis is a skin disease with red patches and white scales that do not go away.
Guselkumab injection is also used alone or with other medicines (eg, methotrexate) to treat active psoriatic arthritis,...

Do you have a liver condition along with plaque psoriasis, psoriatic arthritis or other skin condition? Are you using Tremfya and has it brought you relief?

REPLY
@gaylea1

@jeanne5009 you may have seen several of my posts on this topic. I have come to terms that there is absolutely nothing that gives me relief. I am also stage 4 but the itching started much earlier. I wish I could be of more help. Several others have tried various remedies that have helped them. Maybe one may be right for you. Best of Luck.

Jump to this post

Ask your doctor about trying Tremfya.

REPLY

Same here. I'm very forgetful now. If my wasn't attached I'd forget that too

REPLY
@racing212

I take both of them. I've had it so bad were I woke up a few days later and not know where I was or how I got there

Jump to this post

I took lactulose and rifaxamin and that lessened the episodes in frequency but many times I woke in the hospital. Loss of memory is what got me the most.

REPLY
@contentandwell

@racing212 I had those issues while I was waiting for a transplant, they were what brought my cirrhosis to the forefront of my medical care. I had some very mild episodes and if I lay down and napped for a while I woke up fine, but I did have others where I had major confusion and delirium and ended up hospitalized for a few days. I had one episode that I can remember quite well. I was sitting on the sofa and totally unresponsive. I remember it as if I was observing it! My husband was very concerned and called a doctor friend of ours who immediately said I needed to go to the hospital - that was early on, before my cirrhosis was diagnosed and before I was on medication.
I am sorry you are dealing with this. Are you on lactulose or xifaxan? Xifaxan really was a huge help for many months, and when the episodes began again I had to resume taking lactulose, but even then I had minor episodes. That was shortly before my transplant.
JK

Jump to this post

I take both of them. I've had it so bad were I woke up a few days later and not know where I was or how I got there

REPLY
@racing212

I got confused and forgot what I was doing.weak Shakey passing out

Jump to this post

@racing212 I had those issues while I was waiting for a transplant, they were what brought my cirrhosis to the forefront of my medical care. I had some very mild episodes and if I lay down and napped for a while I woke up fine, but I did have others where I had major confusion and delirium and ended up hospitalized for a few days. I had one episode that I can remember quite well. I was sitting on the sofa and totally unresponsive. I remember it as if I was observing it! My husband was very concerned and called a doctor friend of ours who immediately said I needed to go to the hospital - that was early on, before my cirrhosis was diagnosed and before I was on medication.
I am sorry you are dealing with this. Are you on lactulose or xifaxan? Xifaxan really was a huge help for many months, and when the episodes began again I had to resume taking lactulose, but even then I had minor episodes. That was shortly before my transplant.
JK

REPLY
@rosemarya

Hi, @racing212. I am so sorry to learn that you are again having elevated ammonia levels. On the other hand, I am glad that you are in a good place to be taken care of.
I have not had issues with my ammonia levels, and feel helpless as to what to say to you. However, I am here and I am thinking about you.
Will you let me know how you are feeling? How can I be of help or support for you?

Jump to this post

I got confused and forgot what I was doing.weak Shakey passing out

REPLY
Please sign in or register to post a reply.