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 | Jul 25, 2023
In reply to @chuckg "Hi, @rosemarya. I was diagnosed with PSC in 2005. From that time until around 2020 I..." + (show)
@chuckg

Hi, @rosemarya. I was diagnosed with PSC in 2005. From that time until around 2020 I was coping and managing PSC with the usual drug regiment. I had a pretty bad bleed esophageal in Colorado (on vacation) and had an emergency banding done.

With that episode it was time to go to Duke transplant clinic. I had developed some scaring on the liver and it was determined that autoimmune hepatitis was causing that. Add inguinal hernia on right side below liver-diagnosed a few months back to the mix. Said there's a 13% chance for liver decomposation.

I am currently working to get stronger and get BMI down. Also will see a denist for a recommended deep clean. Plus other to do items such as an upcoming MRCP, EGD and some 34 lab test.
My current MELD is 17 and I have the listing which will be done in late October. I hope the listing is successful. When is accepted, then take care of hernia.

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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?

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 25, 2023

@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/
-
@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/
-
- Living Life after your Transplant
https://connect.mayoclinic.org/discussion/living-life-after-your-transplant/

REPLY
chuckg | @chuckg | Jul 25, 2023

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.

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tharaphiphyo96 | @tharaphiphyo96 | Nov 22, 2023
In reply to @crystalfaye "Hello. I sympathize with those of you who are dealing with post transplant itching. I am..." + (show)
@crystalfaye

Hello. I sympathize with those of you who are dealing with post transplant itching. I am six months post and my chronic itching began around two and a half months. It was horrible!!!!! I was admitted to the hospital on two separate occasions it was so bad. Post transplant itching is a major sign of issues with your bile ducts. I had every test imaginable and they could not find the culprit. Then my bilirubin went up to 12 and the itching got even worse and landed me back in the hospital again. So this is what my team and I have come up with to help with the itching. I take Ursodial three times a day. It helps to bind the bile salts. I also drink cholesyrine. It is used for high cholesterol but also has proven to aid with those who have itching. I am on hydroxyzine and Benadryl every six hours. Normally one would not take these two drugs together but it has helped me tremendously. I also take Zoloft which is an anti-depressant but is used for itching as well. Gabapentin was added recently to help with the pain of itching. This is a lot of medication and I don't like taking all of it. However, the itching was so bad for me I would scratch until I bled. On my own I have come up with using Sarna lotion that has the menthol and camphor in it. It works as a cooling agent. My Dermatologist advised me to keep it in the refrigeration so that it is cold. So I use the Sarna lotion and mix it in my hand with a little bit of Benadryl gel for itching. I apply this first to my feet and then put on thin white socks. I then just work my way up my body applying it all over. All of this is what helped me. My itching was so bad that I felt like I just simply couldn't deal with it anymore. I pray that this information will help and that you will feel some relief. Also, stay busy doing something all of the time. The itching is worse when you are not active. Feel free to message me anytime.

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Can I text you in private?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 22, 2023
In reply to @tharaphiphyo96 "Can I text you in private?" + (show)
@tharaphiphyo96

Can I text you in private?

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Hi, @tharaphiphyo96, new members cannot send private messages but they can receive private messages. However I’d like to point out that you can benefit from the knowledge, support and help of many members by posting on the forum. How can I help?

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