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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@bikermike

Rosemary, Thanks for the welcome.My bile duct issue was post transplant. I hav a blocked right hapatic artery that was caused because the donor liver had a larger connection where it was attached to my body. They considered might have to do another transplant. Liver was functioning so well that they waited to see how I would do. It created it's own path of new blood flow so liver was good but bile duct suffered. They continue to put stints in but recently I had ERCP #10 or #11. They said if they cant get it stretched they might have to open me up again and do repair surgery to duct. We are hoping it doesnt come to this.

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@bikermike Hopefully they will be able to stretch the ducts to avoid another surgery. I imagine that's the last thing you want, to have to go through surgery again. I know it would be for me.
JK

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@gaylea1

@bikermike I am going through the exact same thing. My transplant was Nov 2018. They have been unable to place a stent in my bile duct after several attempts. Right now I have an internal and external drain. I also had to be opened up and reoperated on due to an artery that need to be regrafted. I'm hoping next ERCP will be successful.

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@gaylea1
My friend had 2 ERCPs done in a week Finally they transferred him to a hospital that did a EUS Endoscopy with ultra sound. They removed a 9cm gall stone from his common bile duct!
Third time is the charm...good luck to you

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@gaylea1

@bikermike I am going through the exact same thing. My transplant was Nov 2018. They have been unable to place a stent in my bile duct after several attempts. Right now I have an internal and external drain. I also had to be opened up and reoperated on due to an artery that need to be regrafted. I'm hoping next ERCP will be successful.

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gaylea1, I am sorry to hear you are going through it too. They kept me on the transplant list for the first 1 1/2 yrs to 2 yrs in case they had to give me another liver. They told me if they had to open me up it would be better to do sooner rather than later. They put me o. Blood thinners for 18 months and said luckily they worked to create new blood flow to artery. When I asked if it was going to be like this from now on, the doctor told me that ERCP was something they can continue but ultimately they would have to discuss to open back up and think about the risk outweighing the reward. Where did you have your transplant done. I had mine in Phoenix and Dr. Singer did my surgery. He is a great guy. They have such a great team and I totally trust their decisions. Please keep me posted how you are doing. If you have any questions or just want to talk I am here. Very nice to hear from you.

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@bikermike

gaylea1, I am sorry to hear you are going through it too. They kept me on the transplant list for the first 1 1/2 yrs to 2 yrs in case they had to give me another liver. They told me if they had to open me up it would be better to do sooner rather than later. They put me o. Blood thinners for 18 months and said luckily they worked to create new blood flow to artery. When I asked if it was going to be like this from now on, the doctor told me that ERCP was something they can continue but ultimately they would have to discuss to open back up and think about the risk outweighing the reward. Where did you have your transplant done. I had mine in Phoenix and Dr. Singer did my surgery. He is a great guy. They have such a great team and I totally trust their decisions. Please keep me posted how you are doing. If you have any questions or just want to talk I am here. Very nice to hear from you.

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@bikermike Hi there. Thank you for your encouragement. I don't know if they will continue trying the ERCPs. It has been mentioned that perhaps another transplant may be a possibility. I had my transplant done at the transplant clinic in London Ontario at the University Hospital. We have a whole floor and medical team dedicated to transplants. My next ERCP is scheduled for Wed Mar 20th. Last 2 attempts ended with me being hospitalized for severe pancreatitis. Very painful and no food for 8 weeks. I'm still recovering. I'm praying this 3rd attempt is successful.

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@bikermike

Rosemary, Thanks for the welcome.My bile duct issue was post transplant. I hav a blocked right hapatic artery that was caused because the donor liver had a larger connection where it was attached to my body. They considered might have to do another transplant. Liver was functioning so well that they waited to see how I would do. It created it's own path of new blood flow so liver was good but bile duct suffered. They continue to put stints in but recently I had ERCP #10 or #11. They said if they cant get it stretched they might have to open me up again and do repair surgery to duct. We are hoping it doesnt come to this.

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@bikermike
I hope that you won't need a second surgery. But if you do need it, take comfort in knowing that at least there is an alternate plan for your recovery. I do not have a bile duct due to my bile duct related liver disease. My surgeon performed (in my laymans terms) creative plumbing that connects to my intestines. It works very well. At 1 year post transplant, I did need and to have a surgical repair because it got kinked in a small gap in my intestines. I don't know what your surgery would be like, but for me that repair surgery was much easier for me.
I am happy hat you saw this post, @gaylea1. I am sending my strongest wishes your way for successful results when you have next ERCP. Are you at home now? Do you know when you will have the ERCP?

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@rosemarya

@bikermike
I hope that you won't need a second surgery. But if you do need it, take comfort in knowing that at least there is an alternate plan for your recovery. I do not have a bile duct due to my bile duct related liver disease. My surgeon performed (in my laymans terms) creative plumbing that connects to my intestines. It works very well. At 1 year post transplant, I did need and to have a surgical repair because it got kinked in a small gap in my intestines. I don't know what your surgery would be like, but for me that repair surgery was much easier for me.
I am happy hat you saw this post, @gaylea1. I am sending my strongest wishes your way for successful results when you have next ERCP. Are you at home now? Do you know when you will have the ERCP?

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@rosemarya Hi Rosemary. I am at home niw building up strength. My next ERCP is this Wed. Praying this time is the charm.

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@dtknoxville

Hello Rosemary! Thank you for the kind words. I have been on Ursodiol for a good part of my 9 yr journey. It was prescribed for the itching exclusively, and it truly keeps me from itching so bad. I am glad to know about this group, as I greatly enjoy helping others with liver disease. My journey has been a rough one, but I have found peace with my diseases and feel blessed to be here. Thanks for what you do!

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I am 46 recently diagnosed with Nash will be part of a study very soon did start having a lot of itchy ness I have been complaining about something being wrong with me since 2016 needless to say not to happy about this diagnosis

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@caro72

I am 46 recently diagnosed with Nash will be part of a study very soon did start having a lot of itchy ness I have been complaining about something being wrong with me since 2016 needless to say not to happy about this diagnosis

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@dtknoxville If it hasn't progressed to cirrhosis I believe it is reversible with diet. I had NASH cirrhosis but itching was not a symptom I had. I hope you do discover that you can still reverse it, and even if it has progressed, many people are able to stave it off with diet. Please keep us up to date on how things are going.
JK

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@contentandwell

@dtknoxville If it hasn't progressed to cirrhosis I believe it is reversible with diet. I had NASH cirrhosis but itching was not a symptom I had. I hope you do discover that you can still reverse it, and even if it has progressed, many people are able to stave it off with diet. Please keep us up to date on how things are going.
JK

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It’s cirrhosis and where I am from we don’t have the best of specialist so I am asking to go where there is a better chance of getting my questions answered and talk about transplant for in the future I have been off work for a bit now for other reasons I want to go back to work but need for my job to understand I don’t always feel well need to limit my stress need to take care of my diabetes.... also my itchy ness is mostly evenings and nights is that normal ??

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@caro72

It’s cirrhosis and where I am from we don’t have the best of specialist so I am asking to go where there is a better chance of getting my questions answered and talk about transplant for in the future I have been off work for a bit now for other reasons I want to go back to work but need for my job to understand I don’t always feel well need to limit my stress need to take care of my diabetes.... also my itchy ness is mostly evenings and nights is that normal ??

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@caro72
Carol, Welcome to Mayo Clinic Connect. I am happy that you have found this group where patients are sharing their own experiences. I assure you that you are not alone in your opinion of "not being happy" about your diagnosis. When I received my own diagnosis, I was confused and frightened, and felt helpless. Fortunately, I had a terrific doctor who referred me to a gastroenterologist (GI) nearby who monitored my condition. He monitored me for 8 years until he referred me to transplant department. Are you within driving distance of a larger medical center where you can get in to see a GI?
I was just over 50 when I got my diagnosis. I did not have NASH, but I am aware that all of us with a liver disease diagnosis share many common symptoms.
When I developed itching, I found some relief by using the lotion Sarna. Another temporary relief ws provided by warm bath using one of the Aveeno products for that purpose. That was 10 years ago, I don't know what is on the market today. I was also approved to take minimal doses of antihistimines.

I want to share the following information that has been collected for NASH Patients: Blog Round-Up - You will be able to participate in any of the conversation there, too.
https://connect.mayoclinic.org/page/transplant/newsfeed/nash-patients-blog-round-up/

I do not have diabetes, and I have no experience to share about that.
How did you learn that you had NASH? If you are comfortable to share, I would be interested in what kind of a study you will be involved in. Is there a GI involved with that study?
I am looking forward to hearing from you.

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