Liver disease itching

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.

Liked by dntsass01

@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

Liked by bikermike

@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

Liked by gaylea1, bikermike

@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.

Liked by jeanne5009

@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.

@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?

Liked by bikermike

@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.

@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

@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

@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 ??

@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.

@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 Please, don't despair. As I said, even if it has progressed to cirrhosis I have heard of many cases where people have been able to keep it manageable with diet. Of course, that would be dependent on how far along the cirrhosis is.
You need to find a hepatologist, preferably one at a good transplant center. They will help you manage the cirrhosis, and when you have reached a certain point will have you tested to be a candidate on the transplant list.
This is a great site for finding transplant centers, anywhere. I hope there is at least one close enough for you to be able to go there. I am in NH and there are no liver transplant centers up here but there are four adult transplant centers in MA so I chose Massachusetts General Hospital and was very happy with my choice:

https://www.srtr.org/transplant-centers/?organ=liver&recipientType=adult&query=

The best way to find a center close to you if you are close to other states, is to put in your zip code and the distance from that zip code where you like results. If you google liver transplant centers, there are many results that can help you find the right place to seek medical care.
JK

@rosemarya

@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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Yes I do have a gastroenterologist but he is not really paying much attention to my symptoms and to how I feel with this sickness he can’t even tell me what diet I should be on, tells me I don’t have pain in my rt upper quadrant and such I am not at the point for liver transplant for now since it’s compensated Nash for now I am not a last minute person and I am a nurse so it’s hard for me since I know somewhat what this is …. I am about 4 hours from a transplant centre and hopefully this research will help it’s Obeticholic acid double blinded study it’s for 2 years first year some will be on the med and some on a placebo they will collect data from blood work for a year then everyone in the study will take the med for the second year in our area they said I was the youngest on the trial …

@caro72

Yes I do have a gastroenterologist but he is not really paying much attention to my symptoms and to how I feel with this sickness he can’t even tell me what diet I should be on, tells me I don’t have pain in my rt upper quadrant and such I am not at the point for liver transplant for now since it’s compensated Nash for now I am not a last minute person and I am a nurse so it’s hard for me since I know somewhat what this is …. I am about 4 hours from a transplant centre and hopefully this research will help it’s Obeticholic acid double blinded study it’s for 2 years first year some will be on the med and some on a placebo they will collect data from blood work for a year then everyone in the study will take the med for the second year in our area they said I was the youngest on the trial …

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@caro72, My experience is that you probably do not need a transplant center now. And maybe you never will. Would you consider finding a different GI?
It sounds interesting to be part of a research study. Do you mind me asking how you got involved in it? There must be some connection to a reliable research team connected with NASH/liver disease who will be available to you? How will you be monitored for your liver health during this 2 year interval?

@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
Hi Miss itchy!
I have had Stage 4 cirrhosis for 3 years. Like
You, I got the itchies. I went to my regular PcP, 2 dermatologists and did a ton of research. They diiagnosed Ecxema which I believe is due to my poor auto immune system. I scrathed myself silly at night. Steroid creams helped a little but I used different products on different days. I tried everything Aveeno.shampoo, body wash and their anti itch cream worked pretty well. Then ther was Lidiocane RX ,Triamcunolone RX..best one, Doxi gaba cream, Elidel. And apple cider vi negar on my hair and in a tub.
None of that stuff cured it…it had to leave in its own sweet time…about 3 mo.The doc gave me hydoxcine to help me sleep.
So sorry you got this happy side effect. Always check with your doc before you do anything because we all are different.
Good Luck
PS Get to the best hepatologist you can find ASAP. It takes time to get appts.
Keep your PCP if he knows anything about cirrhosis. It is importanr to get one that knows about it and is willing to work with your hepatologist.
I have a great one who had a patient who had a transplant and is doing fine. I have an excellent hepatologist who is head of the transplant team in Tampa…45 min away. I also have been evaluated at Mayo in Jacksonville. Just cant tell you enough good things about them. I am too early but have developed a heart issue that could change that. So now I am trying to get a cardiologisr appt. At Mayo or Temple General. Thank God I have good insurace!,

@rosemarya

@caro72, My experience is that you probably do not need a transplant center now. And maybe you never will. Would you consider finding a different GI?
It sounds interesting to be part of a research study. Do you mind me asking how you got involved in it? There must be some connection to a reliable research team connected with NASH/liver disease who will be available to you? How will you be monitored for your liver health during this 2 year interval?

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I am from canada and I was complaining of pain since my gallbladder was removed in 2016 bloodwork after blood work my liver enzymes were always high had a mri done finally got a liver biopsy this past January got my results February 12 a month and one day after my dear dad passed away so I will have monthly bloodwork that takes part for the research then another liver biopsy in a year and it’s through intercept pharmaceuticals in San Diego this med is used for another liver disease and trial for compensated cirrhosis due to non alcoholic steatohepatitis

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