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.

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@crystalfaye

Hello. I am 9 weeks post liver transplant. About 4 weeks ago I started itching. No particular spot just all over and it seems to get worse at night. I mentioned this at my last clinic appointment and was informed that this happens to a lot of transplant recipients. They are not concerned even though my ALP is a bit elevated. Has anyone dealt with this and if so what did you use for the itching?

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I had some intense itching before my transplant but it was localized to specific areas of my body. What I am experiencing now is more of an all over skin irritation. Like my skin is crawling if that makes since. They put me on a multi-vitamin but I haven't seen any difference as of yet. It has only been a week. I am also diabetic and take insulin which complicates things a bit. All in all I am feeling pretty good. My strength and appetite are returning by leaps and bounds. It was so nice to walk around a store yesterday, with my mask on of course, and not have to use a walker or cane.

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@crystalfaye

Hello. I am 9 weeks post liver transplant. About 4 weeks ago I started itching. No particular spot just all over and it seems to get worse at night. I mentioned this at my last clinic appointment and was informed that this happens to a lot of transplant recipients. They are not concerned even though my ALP is a bit elevated. Has anyone dealt with this and if so what did you use for the itching?

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@crystalfaye I had terrible, terrible itching both pre and post transplant. I used Sarna anti itch cream extra strength with menthol. And of course, friends hands, door jams, spoons. It was torture and mostly on my back. Post transplant it lasted a month then began to fade. I still put moisturizer all over, except my scar, each morning after showering. Itching is no longer a worry after a year of relentless itching. It is very common.

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@crystalfaye

Hello. I am 9 weeks post liver transplant. About 4 weeks ago I started itching. No particular spot just all over and it seems to get worse at night. I mentioned this at my last clinic appointment and was informed that this happens to a lot of transplant recipients. They are not concerned even though my ALP is a bit elevated. Has anyone dealt with this and if so what did you use for the itching?

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@crystalfaye, I commend you for discussing this with your transplant team. I had itching before my transplant, but I don't remember it being a problem afterwards. I hope that this discussion, specific to after transplant itching will catch the eye of some of our transplant recipients.

In the meantime, here a discussion where members have shared experiences with pre-transplant itching.
-Liver disease itching: What helps?
https://connect.mayoclinic.org/discussion/liver-disease-itching/?
@crystalfaye, Did you have liver failure related itching before your transplant? Your clinic said that this after transplant itching happens a lot (as a patient, I did not know that) - So did they offer any suggestions?

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Hello. I am 9 weeks post liver transplant. About 4 weeks ago I started itching. No particular spot just all over and it seems to get worse at night. I mentioned this at my last clinic appointment and was informed that this happens to a lot of transplant recipients. They are not concerned even though my ALP is a bit elevated. Has anyone dealt with this and if so what did you use for the itching?

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@paulmarchandinbehalfoffriend

Vinegar: your account is parallel to that of my sweet friend. She has a MELD of about 14. Yesterday morning she messaged that she was miserable with itching.
1) washed bedding in no-fragrance detergent (she previously used perfumed-up detergent, and she uses too much)
2) went on vitamin D3 solar walk, about 25 minutes, with skin exposure. At this point still itching, with scratching marks
3) epsom salt bath. Did a little good, but still itching
4) rubbed a "solution" of 2/1 water/vinegar (regular 5% house vinegar) on her.....fanned it with a notebook to reduce burning sensation......it worked ! For about 3 hours or so. She repeated one more time. Seems it did the trick
* * I looked up " cirrhosis itching vinegar " , but only little result, mostly about INGESTING, orally, apple cider vinegar, but only a small handful related to itching. As far as being beneficial or toxic to liver the results were on both sides, seems more pro than con.
I tentatively "conclude" (again, tentatively) that the risk is small (could actually be good for her) if taken orally, THUS if applied to skin would be (I assume) little absorption, that * the benefits outweight any risk * *****
I am bringing her on a solar vitamin D3 walk (again, with skin exposure) again today.
She also popped a vit D pill (50% daily value). Maybe should have popped a couple of more?
God have mercy, best wishes to all.

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Welcome, Paul. How is your friend doing?

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@jeanne5009

@rosemarya
I will be calling my hep tomorrow. STILL itching with bumps and scabs on my head. Today I tried apple cider vinegar! To get me to try gimicy trends is unheard of but Im desperate. Believe it or not...I have to say it seems to be working. I took a cup in the shower added another cup of warm H2o and pored it over my head. I hardly use soap except castile which I have used for years. Switched to no fragrence laundry soap too.. I'm using Aveeno oatmeal body wash for my hair. We'll see...
Wondering if the water company added a different chemical.. nobody told us life would be this much fun!!! L o l

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Vinegar: your account is parallel to that of my sweet friend. She has a MELD of about 14. Yesterday morning she messaged that she was miserable with itching.
1) washed bedding in no-fragrance detergent (she previously used perfumed-up detergent, and she uses too much)
2) went on vitamin D3 solar walk, about 25 minutes, with skin exposure. At this point still itching, with scratching marks
3) epsom salt bath. Did a little good, but still itching
4) rubbed a "solution" of 2/1 water/vinegar (regular 5% house vinegar) on her.....fanned it with a notebook to reduce burning sensation......it worked ! For about 3 hours or so. She repeated one more time. Seems it did the trick
* * I looked up " cirrhosis itching vinegar " , but only little result, mostly about INGESTING, orally, apple cider vinegar, but only a small handful related to itching. As far as being beneficial or toxic to liver the results were on both sides, seems more pro than con.
I tentatively "conclude" (again, tentatively) that the risk is small (could actually be good for her) if taken orally, THUS if applied to skin would be (I assume) little absorption, that * the benefits outweight any risk * *****
I am bringing her on a solar vitamin D3 walk (again, with skin exposure) again today.
She also popped a vit D pill (50% daily value). Maybe should have popped a couple of more?
God have mercy, best wishes to all.

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@wildcat

Hello

You have my sympathy. My itching was so bad on the front of my legs that I scratched them until they bled; I just could not help it. I tried everything recommended by my doctor but nothing helped until I tried E45 anti-itch cream. Different creams seem to work for different people but this was a life saver for me. Good luck.

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I did a quick search and learned that E45 Itch Relief Cream does not show up when I search for anti-itch creams. That is when I saw that it is a UK brand and discovered that it is available at the major chain retailers with the lotions and creams.
Here is some information that I found.
E45 Itch Relief Cream is used to treat and soothe itching caused by conditions such as eczema, dermatitis, puritis and other dry skin conditions.
Ingredients:
Urea 5.0% w/w. Lauromacrogols 3.0% w/w. Also contains: Dimeticone. Phenyl Dimeticone. Liquid Paraffin. Cetyl Palmitate. Stearic Palmitic Acid. Octyldodecanol. Polysorbate. Carbomer. Glycerol. Benzyl Alcohol. Trometamol. Purified Water.

@wildcat, Thanks for reaching across the many miles to share another possible solution for itch relief.

It is wonderful to hear your voice.
Do you have a photo(s) that you might share from Scotland in the discussion:
Snapshots of hope: Life on the other side of transplant.
https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/
@wildcat - How are you doing? How long has it been since your transplant?

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Hello

You have my sympathy. My itching was so bad on the front of my legs that I scratched them until they bled; I just could not help it. I tried everything recommended by my doctor but nothing helped until I tried E45 anti-itch cream. Different creams seem to work for different people but this was a life saver for me. Good luck.

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@btg

@ugadawg1067 around the time I got listed my itching was about as bad as yours. When the cream and the cholestyramine drink powder stopped working one of the transplant hepatologists prescribed Zoloft for me to try. While the Zoloft did absolutely stop the itching, it came with some side effects that were not desirable. They backed me off of what they had originally prescribed which still worked with less intense side effects. You may want to ask about that, just make sure to ease into it with their guidance. Good luck, I know like many of us do what that intense itching was like. When it started ruining my sleep that was really the last straw. Keep us posted and we’ll all pray that you’ll get your transplant soon. That, seems to be the only cure for the itching.

Be well,

Bryan

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I itched terribly for nearly 2 years. My hepatologist also prescribed Zoloft as it has an anti-itch side effect. It worked marginally for me, but also made me emotionally flat.
I tried every lotion & gel but always felt sticky. Sarna lotion helped, but I recommend the unscented version. I found that witch hazel helped, but it dries the skin. I would wake up at night multiple times and put witch hazel on a washcloth and just apply it to my skin for immediate relief. The other thing that helped were ice packs. I would sleep with large ice packs in my bed. I think the cold sensation trumped the terrible itching. I would put a towel between my skin and the ice packs.
I also recommend that you purchase simple white cotton gloves that you can wear to bed. These are available on Amazon and are inexpensive. I would scratch to the point of breaking my skin during my sleep, so the gloves helped.

One of the first things I noticed when I woke up post-transplant was that my itching was gone! Blessed Relief!

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@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??

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@ugadawg1067 around the time I got listed my itching was about as bad as yours. When the cream and the cholestyramine drink powder stopped working one of the transplant hepatologists prescribed Zoloft for me to try. While the Zoloft did absolutely stop the itching, it came with some side effects that were not desirable. They backed me off of what they had originally prescribed which still worked with less intense side effects. You may want to ask about that, just make sure to ease into it with their guidance. Good luck, I know like many of us do what that intense itching was like. When it started ruining my sleep that was really the last straw. Keep us posted and we’ll all pray that you’ll get your transplant soon. That, seems to be the only cure for the itching.

Be well,

Bryan

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