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.
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.
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.
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?
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?
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!
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!
@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!
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 ?
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 ?
@threerr3
Interesting…last week my AST was 34. Pcp wants to wait 2 weeks and repeat. I've had 3 rounds of prednisone but they are not anxious to prescribe more. Im an itchy mess. I'm going to contact my hep and transplant team for better advice on Monday.
@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!
jeanne5009, This is a long shot, but is there any tiny chance thst there is an ingredient in your soap or shampoo that is partly to blame for the severity of the itch?
In another post you mentioned calling the liver specialist tomorrow. I think that is a good idea. My experience has been that our PCP's are terrific, however, the livet specialist has in depth training and familiarity with our complicated livers.
jeanne5009, This is a long shot, but is there any tiny chance thst there is an ingredient in your soap or shampoo that is partly to blame for the severity of the itch?
In another post you mentioned calling the liver specialist tomorrow. I think that is a good idea. My experience has been that our PCP's are terrific, however, the livet specialist has in depth training and familiarity with our complicated livers.
@rosemarya
I will be calling my hep tomorrow. STILL itching with bumps and scabs on my head. Today I tried apple cider vinegar! To get me to try gimicy trends is unheard of but Im desperate. Believe it or not…I have to say it seems to be working. I took a cup in the shower added another cup of warm H2o and pored it over my head. I hardly use soap except castile which I have used for years. Switched to no fragrence laundry soap too.. I'm using Aveeno oatmeal body wash for my hair. We'll see…
Wondering if the water company added a different chemical.. nobody told us life would be this much fun!!! L o l
Hi Jeanne5009, I am a post transplant patient (June 2016) and have experienced the uncontrollable itch. I had it pre transplant and still get post transplant as I have a bile duct issue. I wanted to let you know the ursodiol they speak of is great…. However recently they increased my does significantly which caused the uncontrollable itching to come back. I went from 250mg twice a day to 600mg twice a day. So with right dose it works well. And yes is expensive. It is a tier 4 for medications. Prograff and cellcept ( anti rejection meds) and insulin are tier 3 if that tells you how powerful it is. Hang in there, I know how miserable it is!
Hi Jeanne5009, I am a post transplant patient (June 2016) and have experienced the uncontrollable itch. I had it pre transplant and still get post transplant as I have a bile duct issue. I wanted to let you know the ursodiol they speak of is great…. However recently they increased my does significantly which caused the uncontrollable itching to come back. I went from 250mg twice a day to 600mg twice a day. So with right dose it works well. And yes is expensive. It is a tier 4 for medications. Prograff and cellcept ( anti rejection meds) and insulin are tier 3 if that tells you how powerful it is. Hang in there, I know how miserable it is!
@bikermike
Thanks..its gone for now and I have no idea which one of the meds did it. I think its the auto immune issue that is triggering it so now Im searching for a way to keep it from coming back! Miserable stuff.
This is Bike Week in Daytona….are you going?? Lol
I wish I was there. Went once about 10 years ago and sturgis about 5 years ago. That is my best medicine to get out and ride. I'm glad the itching has stopped. It can drive you crazy.
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Thanks…i see my dermatologist today and will ask her.
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?
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!
@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!
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 ?
Jeanne,
Yes it does go away with Ursodiol 2-3 times daily. We will win this no doubt.
@threerr3
Interesting…last week my AST was 34. Pcp wants to wait 2 weeks and repeat. I've had 3 rounds of prednisone but they are not anxious to prescribe more. Im an itchy mess. I'm going to contact my hep and transplant team for better advice on Monday.
jeanne5009, This is a long shot, but is there any tiny chance thst there is an ingredient in your soap or shampoo that is partly to blame for the severity of the itch?
In another post you mentioned calling the liver specialist tomorrow. I think that is a good idea. My experience has been that our PCP's are terrific, however, the livet specialist has in depth training and familiarity with our complicated livers.
@rosemarya
I will be calling my hep tomorrow. STILL itching with bumps and scabs on my head. Today I tried apple cider vinegar! To get me to try gimicy trends is unheard of but Im desperate. Believe it or not…I have to say it seems to be working. I took a cup in the shower added another cup of warm H2o and pored it over my head. I hardly use soap except castile which I have used for years. Switched to no fragrence laundry soap too.. I'm using Aveeno oatmeal body wash for my hair. We'll see…
Wondering if the water company added a different chemical.. nobody told us life would be this much fun!!! L o l
Hi Jeanne5009, I am a post transplant patient (June 2016) and have experienced the uncontrollable itch. I had it pre transplant and still get post transplant as I have a bile duct issue. I wanted to let you know the ursodiol they speak of is great…. However recently they increased my does significantly which caused the uncontrollable itching to come back. I went from 250mg twice a day to 600mg twice a day. So with right dose it works well. And yes is expensive. It is a tier 4 for medications. Prograff and cellcept ( anti rejection meds) and insulin are tier 3 if that tells you how powerful it is. Hang in there, I know how miserable it is!
@bikermike
Thanks..its gone for now and I have no idea which one of the meds did it. I think its the auto immune issue that is triggering it so now Im searching for a way to keep it from coming back! Miserable stuff.
This is Bike Week in Daytona….are you going?? Lol
I wish I was there. Went once about 10 years ago and sturgis about 5 years ago. That is my best medicine to get out and ride. I'm glad the itching has stopped. It can drive you crazy.