Liver disease itching: What helps?

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 ?

@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!

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!

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?

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

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.

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.

@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.

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?

@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.