Liver disease itching: What helps?

Hi, @chuckg. I lived with my PSC diagnosis for around 8 years before my liver began to exhibit signs of cirrhosis. I had checkups and labs every 3 months from a wonderful GI who guided me until my symptoms and MELD indicated that I was ready for evaluation and placement on the UNOS liver transplant waiting list. That is when I began to develop complications and and was sent from Kentucky to Mayo in Rochester. In 2009 I received a simultaneous liver and kidney transplant from an anonymous deceased donor. My journey was like an out-of-control roller coaster, but my transplant team treated me and guided me to where I am today.
I can see that you are in a good place for good care, and it sounds like you are (in the words of my GI) getting things in order so that you will be ready when the time comes! Chuck, I want to encourage you to keep on taking care of yourself and following your doctors' advice as you proceed further toward the listing and eventual transplant.
I joined Connect because I was looking for someone/anyone who had PSC and a transplant. I am happy to meet you, and I want to let you know that I am a transplant recipient who had PSC, and I am living a healthy and active life!!

I will be thinking of you as your October evaluation approaches. And I am available to answer any questions or concerns that you or your caregiver might have. Do you have any questions?

@keithjp77
Happy (almost) first year transplant anniversary!!!
As for the itching, I'm happy that you are getting relief, and that it is not related to your new liver. Do you have any plans for celebrating your anniversary?
Here are some ideas, and I would love for you to share yours, too! Just click on this link:
- Happy "Transplantiversary"!
https://connect.mayoclinic.org/discussion/happy-transplantiversary/
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@muddlycrew, Welcome to Connect and Congratulations on your recent liver transplant!
I look forward to hearing about your liver transplant experience and I would like to connect yo with other patients who might have similar experiences. How is your recovery going? Are you at home or in the hospital? What questions would you like to ask?

@footballmum, I also got some relief from Aveeno Oatmeal Bath. I remember how cold I was before my transplant and how difficult it was for me to get in and out of the tub with my ascites weighing me down.

@lsheerin, Is your husband experiencing itching? My itching developed during the summer after my husband and I were hiking, and I wrongly assumed it was a rash from weeds. I struggled with it for what seemed like forever, but then it just went away around the same time that I began some new meds when I was sent from my GI to a liver transplant appointment in KY.

@keithjp77, @muddlycrew, @lsheerin, @footballmum, @chuckg - As Members on Connect, you are welcome to join in any support discussion. You can scroll thru the topics yourself. Here are some that I thought might be of interest to you. Click on the link and join in the conversations.
- Snapshots of hope: Life on the other side of transplant.
https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/
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- Living Life after your Transplant
https://connect.mayoclinic.org/discussion/living-life-after-your-transplant/

Thank you @rosemarya for the kind words and encouragement. I don't really have any questions as I've had a LONG time to see what I needed to do. I had PSC only for close to 14 years before the scaring started and Duke diagnosed that as auto immune hepatitis. They put me on prednisone to help slow the scaring. So, it was this crossover disease that put me over the edge with a MELD score of 17.

Interesting though the statistics I looked at from Duke and Mayo Clinic showed almost as many transplants between MELD scores from 15-20 as 20-30. That gives me hope that the transplant could come sooner than I expected. Again, you seem to be a really nice person and I thank you for the support.

I knew my liver cancer and cirrhosis will give me back itching when I ask my oncologist she said no that is not part of the cancer or cirrhosis sometimes I get very frustrated with my oncologist for the lack of communication about my well being so far my back is ok it stopped itching thanks for all your advice praying for all cancer

Try light therapy! My husband's itching (liver cancer and cirrhosis) was cured by regular light therapy treatments ordered by a dermatologist. 1 or 2 times a week, step into a controlled booth monitored by a technician, for a controlled amount of time (one minute or so--they'll tell you). Not invasive. Ask to see a dermatologist.

Good morning
I found that oatmeal baths helped. I used Aveeno, ( not a paid advertisement). Also calamine location helped.

Me, too! Soaking in the oatmeal bath brought temporary relief. I also found the anti-itch lotion Sarna (not a paid advertisement) to be helpful.

Hi I’m brand new here. I ran across this in a search on medicines I’ve been prescribed ! RIFAXMIN AND URSIDIOL
I am not sure I need these yet . I had HCC - they ablated the liver where I had the growth and after 6 week checkup - I’m well and my meld is an 8 and my blood work looks real good. But because I sd I am a bit forgetful and sometimes I forget words they prescribed me this medication with lactulose- they want me to “go” 5 times a day ??? I had gastric sleeve 4 yrs ago . Ain’t no way I’m “going”five times . And they gave these antibiotics. I don’t think I need them yet. I am not swollen or anything my liver doesn’t hurt . I don’t want to take medication. That lactulose is GROSS! I may vomit 5 times taking it ! Anyway I am going to call them . I think I’m forgetful and just move to fast due to adhd and other mental disorders that make me a bit “ dingy” but not due to liver . I’ve seen people who were that sick . Idk but I’m going to talk again to my drs. What is the opinion here guys? Thank you for letting me join. Also I’m on the transplant list - because I have had the cancer HCC.

@sherry01, Welcome to the conversation. I am a transplant recipient and I remember how confused I was during my pretransplant time when I was very ill, and found everything to be overwhelming and worrisome. I see that you are on the transplant list, is that correct?
You are absolutely correct to be taking your issues to the transplant team! When you talk to them, I encourage you to take someone with you because an extra set of ears and an extra voice will be most helpful so that you have someone to support you when you leave the doctor's office. Also I recommend that you make a list of your concerns...you could use the note that you wrote here an your reference. These are the things that the doctor needs to hear (from you) because our labs don't tell how we fwwl or what we are experiencing after we return home - our voices are the only way that they will know what's going on because we all react to medications differently. They will want to find ways to keep you as healthy as possible so that you can advance to the transplant.
Other members have discussed their experiences with lactulose. I want to share this support group with you. It is long, veers on and off topic, and includes some helpful ideas.
- Lactulose question
https://connect.mayoclinic.org/discussion/lactalose-question/
I did not have cancer, and I did not take lactulose, so no experience to share. But I did have liver failure and kidney failure that resulted in a double tranlant in 2009. And I know that we must continue to take medicines, even if we are feeling like we don't need them.

I hope that you will talk to the doctors real soon, especially with the way the lactulose is affecting you. I wonder of there is an alternative medication. Do you have an upcoming appointment? I look forward to hearing what you fine out.

Clonidine was prescribed for something else and completely took away my debilitating itching. Unfortunately, had to stop it for other reasons. Hope this helps someone.