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jeanne5009 (@jeanne5009)

Liver disease itching

Transplants | Last Active: Dec 26, 2020 | Replies (95)

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@caro72

It’s cirrhosis and where I am from we don’t have the best of specialist so I am asking to go where there is a better chance of getting my questions answered and talk about transplant for in the future I have been off work for a bit now for other reasons I want to go back to work but need for my job to understand I don’t always feel well need to limit my stress need to take care of my diabetes…. also my itchy ness is mostly evenings and nights is that normal ??

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Replies to "It’s cirrhosis and where I am from we don’t have the best of specialist so I..."

@caro72
Carol, Welcome to Mayo Clinic Connect. I am happy that you have found this group where patients are sharing their own experiences. I assure you that you are not alone in your opinion of "not being happy" about your diagnosis. When I received my own diagnosis, I was confused and frightened, and felt helpless. Fortunately, I had a terrific doctor who referred me to a gastroenterologist (GI) nearby who monitored my condition. He monitored me for 8 years until he referred me to transplant department. Are you within driving distance of a larger medical center where you can get in to see a GI?
I was just over 50 when I got my diagnosis. I did not have NASH, but I am aware that all of us with a liver disease diagnosis share many common symptoms.
When I developed itching, I found some relief by using the lotion Sarna. Another temporary relief ws provided by warm bath using one of the Aveeno products for that purpose. That was 10 years ago, I don't know what is on the market today. I was also approved to take minimal doses of antihistimines.

I want to share the following information that has been collected for NASH Patients: Blog Round-Up – You will be able to participate in any of the conversation there, too.
https://connect.mayoclinic.org/page/transplant/newsfeed/nash-patients-blog-round-up/
I do not have diabetes, and I have no experience to share about that.
How did you learn that you had NASH? If you are comfortable to share, I would be interested in what kind of a study you will be involved in. Is there a GI involved with that study?
I am looking forward to hearing from you.

@caro72 Please, don't despair. As I said, even if it has progressed to cirrhosis I have heard of many cases where people have been able to keep it manageable with diet. Of course, that would be dependent on how far along the cirrhosis is.
You need to find a hepatologist, preferably one at a good transplant center. They will help you manage the cirrhosis, and when you have reached a certain point will have you tested to be a candidate on the transplant list.
This is a great site for finding transplant centers, anywhere. I hope there is at least one close enough for you to be able to go there. I am in NH and there are no liver transplant centers up here but there are four adult transplant centers in MA so I chose Massachusetts General Hospital and was very happy with my choice:
https://www.srtr.org/transplant-centers/?organ=liver&recipientType=adult&query=
The best way to find a center close to you if you are close to other states, is to put in your zip code and the distance from that zip code where you like results. If you google liver transplant centers, there are many results that can help you find the right place to seek medical care.
JK

Caro72
Hi Miss itchy!
I have had Stage 4 cirrhosis for 3 years. Like
You, I got the itchies. I went to my regular PcP, 2 dermatologists and did a ton of research. They diiagnosed Ecxema which I believe is due to my poor auto immune system. I scrathed myself silly at night. Steroid creams helped a little but I used different products on different days. I tried everything Aveeno.shampoo, body wash and their anti itch cream worked pretty well. Then ther was Lidiocane RX ,Triamcunolone RX..best one, Doxi gaba cream, Elidel. And apple cider vi negar on my hair and in a tub.
None of that stuff cured it…it had to leave in its own sweet time…about 3 mo.The doc gave me hydoxcine to help me sleep.
So sorry you got this happy side effect. Always check with your doc before you do anything because we all are different.
Good Luck
PS Get to the best hepatologist you can find ASAP. It takes time to get appts.
Keep your PCP if he knows anything about cirrhosis. It is importanr to get one that knows about it and is willing to work with your hepatologist.
I have a great one who had a patient who had a transplant and is doing fine. I have an excellent hepatologist who is head of the transplant team in Tampa…45 min away. I also have been evaluated at Mayo in Jacksonville. Just cant tell you enough good things about them. I am too early but have developed a heart issue that could change that. So now I am trying to get a cardiologisr appt. At Mayo or Temple General. Thank God I have good insurace!,