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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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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
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.

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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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1 reply
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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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
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.

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1 reply
jeanne5009 | @jeanne5009 | Nov 28, 2018
In reply to @rosemarya "I hope you will feel some relief from itching. What has he suggested for you to..." + (show)
@rosemarya

I hope you will feel some relief from itching. What has he suggested for you to do?

Jeanne, you are absolutely correct: No rest! How are you feeling, other than the itching?
Forgive me for asking, but I can't remember, are you on the waiting list for a transplnt? or are you in the waiting and watching phase?

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@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.

REPLY
2 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Nov 28, 2018
In reply to @jeanne5009 "@rosemarya My PCP agreed with your anti itch remedies so Ive got my fingers crossed. My..." + (show)
@jeanne5009

@rosemarya
My PCP agreed with your anti itch remedies so Ive got my fingers crossed. My ALT values were up too so we will retest in 2 wks. Then Im due for MRI endoscopy and routine bloodwork. No rest for tje weary.

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I hope you will feel some relief from itching. What has he suggested for you to do?

Jeanne, you are absolutely correct: No rest! How are you feeling, other than the itching?
Forgive me for asking, but I can't remember, are you on the waiting list for a transplnt? or are you in the waiting and watching phase?

REPLY
1 reply
jeanne5009 | @jeanne5009 | Nov 28, 2018
In reply to @rosemarya "Hi Jeanne, I also had severe itching with my liver disease, as did other liver patients...." + (show)
@rosemarya

Hi Jeanne, I also had severe itching with my liver disease, as did other liver patients.

At first, for the itching, I took an over-the-counter antihistamine. At first this helped give me some relief. But when my itching became severe, my local GI wrote a prescription for Chlorestyramine, a bilebinder and that gave me the relief I needed. It was a powder that I added to a glass of water and drank. But that could have been related to my liver disease, Primary Sclerosing Cholangitis (PSC) a disease that affects the bile ducts.

As far as a topical relief – I got some relief with Sarna anti itch lotion. It is an over the counter lotion.
I also found that a warm bath in Aveeno bath treatment for itchy skin was helpful and soothing, but getting in and out of the tub, was too much for my swollen body at that time.

I don't remember when or why, but sometime during my pre transplant time, and my care by transplant team in Kentucky, and later at Mayo, my itching eased as other bothersome symptoms took over.

Jeanne, Here is a discussion about itching in the Kidney and Bladder Group.
https://connect.mayoclinic.org/discussion/itchy-skin-2ee1a9/

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@rosemarya
My PCP agreed with your anti itch remedies so Ive got my fingers crossed. My ALT values were up too so we will retest in 2 wks. Then Im due for MRI endoscopy and routine bloodwork. No rest for tje weary.

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1 reply
jeanne5009 | @jeanne5009 | Nov 28, 2018

@jenniferhunter
Thank you for this info...I will try this tonight...

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Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Nov 28, 2018
In reply to @jeanne5009 "Sounds great but I have no tub and the rash is on my scalp and my..." + (show)
@jeanne5009

Sounds great but I have no tub and the rash is on my scalp and my back....there must be a way..lol

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@jeanne5009 I found an unscented lotion version with Epsom salts in it. It's from Morton (as in Morton table salt). I think I found it at a Walmart, but you can find it online too. If you wanted to use the crystal version of Epsom salts, use a smaller towel and make a warm solution of it in a tub, soak the towel, and sit with that on you in your shower for a little bit before you dry off. You don't have to rinse that off and can do it after a shower. You can also just use a wash cloth and do this too and apply that to your scalp daily.

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