1. < Transplants

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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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Nov 28, 2018
In reply to @jeanne5009 "@rosemarya Yep the waiting and watching phase for the next delightful symptom. The studying phase..the too..." + (show)
@jeanne5009

@rosemarya
Yep the waiting and watching phase for the next delightful symptom. The studying phase..the too little sponge phase. I look remarkably well...
.so they tell me. I was evaluated at Mayo Jax in June as a"good candidate" just "too early"
Meld is 8. I have a long way to go I guess. To me...that means that everything I have to endure til my time..will be passed on for others to study and absorb. I'm sure you have been there done that! Hoping my sarcastic sense of humor holds out.
Since Mayo is out of network on my plan, I use Tampa General for my go to hepatologist. When it's time I hope to go to Mayo.

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Jeanne, Thanks for refreshing my memory.
For a long time, I looked well, too. And when I told friends that I had liver disease, they 'knew' that I was misdiagnosed. Later, when I did start to look and act unwell, those same people asked me why I hadn't told them about it. Sigh! And that is not mentioning all of the cures that they knew about, when they could not even pronounce my disease.

On the bright side for you - Remember that you have the present time, with low MELD and symptoms, to focus on taking care of yourself. Healthy eating and maintaining a level of activity and fitness will be to your advantage.

It is a good feeling when we know that our crazy medical path will benefit others sometime.
I hope your tests will get the information that the docs are looking for. Keep in touch.

REPLY
David Taylor | @dtknoxville | Nov 28, 2018

Hi Jeanne, I am a Stage 4 Cirrhosis patient (9 years). I have been “on” but now off of the transplant list as my meld has improved. I have terrible itching that is well controlled with a drug called Ursodiol. It is an expensive drug, and some insurance companies will cover it, and some will not. I have also used GoodRx for many drugs including this one. I wish you the best with your care.

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2 replies
jeanne5009 | @jeanne5009 | Nov 29, 2018
In reply to @dtknoxville "Hi Jeanne, I am a Stage 4 Cirrhosis patient (9 years). I have been “on” but..." + (show)
@dtknoxville

Hi Jeanne, I am a Stage 4 Cirrhosis patient (9 years). I have been “on” but now off of the transplant list as my meld has improved. I have terrible itching that is well controlled with a drug called Ursodiol. It is an expensive drug, and some insurance companies will cover it, and some will not. I have also used GoodRx for many drugs including this one. I wish you the best with your care.

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Thanks...i see my dermatologist today and will ask her.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Nov 29, 2018
In reply to @dtknoxville "Hi Jeanne, I am a Stage 4 Cirrhosis patient (9 years). I have been “on” but..." + (show)
@dtknoxville

Hi Jeanne, I am a Stage 4 Cirrhosis patient (9 years). I have been “on” but now off of the transplant list as my meld has improved. I have terrible itching that is well controlled with a drug called Ursodiol. It is an expensive drug, and some insurance companies will cover it, and some will not. I have also used GoodRx for many drugs including this one. I wish you the best with your care.

Jump to this post

Hi, David Taylor @dtknoxville, Welcome to Connect. I am sorry to hear about your itching. I know what misery it is. I had actually forgotten that I was on ursodiol for my pre transplant treatment. I did not even think to associate it with the itching!

David, I am a transplant recipient (liver/kidney 2009), and I would like to invite you to read thru and to join in any of our discussions here on Connect. I am always excited to meet new members and to learn with them as we share our experiences.
For blogs and information from the experts check out the PAGES section of Connect. You can enter thru the link top of this page. Scroll to the very end - You will see the Transplant Pages.

How long have you been taking Ursodiol? Was it prescribed for the itch, or for a liver/bile duct condition?

REPLY
1 reply
David Taylor | @dtknoxville | Nov 30, 2018
In reply to @rosemarya "Hi, David Taylor @dtknoxville, Welcome to Connect. I am sorry to hear about your itching. I..." + (show)
@rosemarya

Hi, David Taylor @dtknoxville, Welcome to Connect. I am sorry to hear about your itching. I know what misery it is. I had actually forgotten that I was on ursodiol for my pre transplant treatment. I did not even think to associate it with the itching!

David, I am a transplant recipient (liver/kidney 2009), and I would like to invite you to read thru and to join in any of our discussions here on Connect. I am always excited to meet new members and to learn with them as we share our experiences.
For blogs and information from the experts check out the PAGES section of Connect. You can enter thru the link top of this page. Scroll to the very end - You will see the Transplant Pages.

How long have you been taking Ursodiol? Was it prescribed for the itch, or for a liver/bile duct condition?

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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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3 replies
jeanne5009 | @jeanne5009 | Nov 30, 2018
In reply to @dtknoxville "Hello Rosemary! Thank you for the kind words. I have been on Ursodiol for a good..." + (show)
@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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@dtknoxville
I have the itch too. Mostly my scalp that is so bad it is starting to hurt. Ive been on prednizone 3 times..but they don't want to give me more. It helped but only while I was on it. Every cream antihistamine etc I've tried only helps a little. I wake up at night scratching. Awful stuff. I will talk to the DR. About Ursodiol tomorrow. Does it ever go away? I'm stage 4 cirrhosis but only meld 8. Changes in my latest Bldwk and now this itch....something new going on....
Hope you are well as can be and thank you for your valuable info. WE WILL WIN THIS TOGETHER ALL OF US!

REPLY
1 reply
threerrr3 | @threerrr3 | Dec 1, 2018

I get that when my numbers get out of control..I had a liver transplant 20 years ago .. I was doing great but had an episode this summer where my liver function went way up and so did all the itching !!! If they can raise your prednisone up and I was on imuran ..not sure what you are taking but it will help get that under control.. your numbers must we way up ?

REPLY
1 reply
David Taylor | @dtknoxville | Dec 1, 2018

Jeanne,

Yes it does go away with Ursodiol 2-3 times daily. We will win this no doubt.

REPLY
jeanne5009 | @jeanne5009 | Dec 2, 2018
In reply to @threerrr3 "I get that when my numbers get out of control..I had a liver transplant 20 years..." + (show)
@threerrr3

I get that when my numbers get out of control..I had a liver transplant 20 years ago .. I was doing great but had an episode this summer where my liver function went way up and so did all the itching !!! If they can raise your prednisone up and I was on imuran ..not sure what you are taking but it will help get that under control.. your numbers must we way up ?

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@threerr3
Interesting...last week my AST was 34. Pcp wants to wait 2 weeks and repeat. I've had 3 rounds of prednisone but they are not anxious to prescribe more. Im an itchy mess. I'm going to contact my hep and transplant team for better advice on Monday.

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Dec 2, 2018
In reply to @jeanne5009 "@dtknoxville I have the itch too. Mostly my scalp that is so bad it is starting..." + (show)
@jeanne5009

@dtknoxville
I have the itch too. Mostly my scalp that is so bad it is starting to hurt. Ive been on prednizone 3 times..but they don't want to give me more. It helped but only while I was on it. Every cream antihistamine etc I've tried only helps a little. I wake up at night scratching. Awful stuff. I will talk to the DR. About Ursodiol tomorrow. Does it ever go away? I'm stage 4 cirrhosis but only meld 8. Changes in my latest Bldwk and now this itch....something new going on....
Hope you are well as can be and thank you for your valuable info. WE WILL WIN THIS TOGETHER ALL OF US!

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jeanne5009, This is a long shot, but is there any tiny chance thst there is an ingredient in your soap or shampoo that is partly to blame for the severity of the itch?
In another post you mentioned calling the liver specialist tomorrow. I think that is a good idea. My experience has been that our PCP's are terrific, however, the livet specialist has in depth training and familiarity with our complicated livers.

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