Liver disease itching: What helps?

Thanks, Rosemary. I read the material you suggested as well as other articles on-line. I would appreciate comments from members of the group. My primary diagnosis is alcohol liver disease, with an initial diagnosis of macronodular cirrhosis. I have never been a heavy alcohol drinker, but my doctor said drinking even moderate amounts of alcohol for many years could lead to alcohol liver disease. To reach this diagnosis, I had lab work, and a sonogram of my liver. My doctor also commented during our first visit I did not look like a typical liver disease patient (not over-weight or having signs of yellow skin discoloration, I guess). He has now prescribed hepatitis A&B vaccines; MRI evaluation of cirrhosis; additional lab work; and an endoscopy. My only symptom, although not directly related to liver disease, is GERD. Well, I do have general symptoms (tired, loss of appetite, weight loss during past six month), but I initially attributed those symptoms to my mitral valve insufficiency and being at a higher elevation during the summer. I modified my diet in mid-June after my Colorado PCP's nurse mentioned I had fatty liver disease; my PCP said I did not have fatty liver disease. Questions: What to expect symptom-wise? Does a strictly-modified diet improve the status of the liver cirrhosis? What symptoms are normal when a patient needs a liver transplant? Should I get a second opinion?
Thanks, Sarah.

@sarah82 - Hi, Sarah, and Welcome to Connect.
I am sorry to learn of your recent diagnosis. I can easily remember when I was diagnosed with a liver disease and how helpless I felt. I commend you for reaching out to find information and to meet others who share a similar diagnosis.

Cirrhosis of the liver can have many causes, with one of them being chronic alcoholism. Here is Information about Cirrhosis:
-Cirrhosis
https://www.mayoclinic.org/diseases-conditions/cirrhosis/symptoms-causes/syc-20351487
Sarah, After you have viewed the Information about cirrhosis, you will see that all of us, who have of have had cirrhosis or liver disease, share many common symptoms. I want to invite you to introduce yourself in the following discussion where other liver patients can see it.
-Liver transplant - Let's support each other
https://connect.mayoclinic.org/discussion/liver-support-group/
Sarah, I will be looking for you in the Liver Support group.

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!!!