jeanne5009
@jeanne5009
@jeanne5009
Posts: 159
Joined: Feb 04, 2018
threerrr3
@threerrr3
@threerrr3
Posts: 28
Joined: Dec 01, 2018
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 ?
David Taylor
@dtknoxville
@dtknoxville
Posts: 3
Joined: Oct 21, 2018
Jeanne,
Yes it does go away with Ursodiol 2-3 times daily. We will win this no doubt.
Liked by Rosemary, Volunteer Mentor
jeanne5009
@jeanne5009
@jeanne5009
Posts: 159
Joined: Feb 04, 2018
@threerrr3 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.
Rosemary, Volunteer Mentor
@rosemarya
@rosemarya
Posts: 3748
Joined: Aug 30, 2011
@jeanne5009 @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
@jeanne5009
@jeanne5009
Posts: 159
Joined: Feb 04, 2018
@rosemarya 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
Liked by Rosemary, Volunteer Mentor
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!
Liked by Rosemary, Volunteer Mentor
jeanne5009
@jeanne5009
@jeanne5009
Posts: 159
Joined: Feb 04, 2018
@bikermike 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
Liked by Rosemary, Volunteer Mentor
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.
REPLY
dntsass01
@dntsass01
@dntsass01
Posts: 16
Joined: Apr 23, 2018
@dtknoxville 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! So sorry to hear of your diagnosis. I'm sure your doctors have mentioned this, but could gluten be causing the itching? I have autoimmune hepatitis and celiac to name a few, but if I get gluten for some reason, I have itching. Good luck.
Liked by Rosemary, Volunteer Mentor
Rosemary, Volunteer Mentor
@rosemarya
@rosemarya
Posts: 3748
Joined: Aug 30, 2011
@bikermike 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, Welcome to Mayo Clinic Connect. I am happy that you have joined the transplant discussion group. I had PSC which affects the bile ducts, so I am well familiar with URSO because I took it pretransplant. I had a simultaneous liver and kidney transplant in 2009.
I am so sorry about the itching. I did not know that URSO helped with that. Is your bile duct issue something that has developed since transplantation? Do you doctors say if this is a temporary situation?
I used SARNA lotion pre-approval transplant. It really stinks but it helped. I used to say I needed an octopus and a bucket of corncobs. Absolutely miserable. Wishing you the best.
Liked by Rosemary, Volunteer Mentor, jeanne5009
@rosemarya @bikermike, Welcome to Mayo Clinic Connect. I am happy that you have joined the transplant discussion group. I had PSC which affects the bile ducts, so I am well familiar with URSO because I took it pretransplant. I had a simultaneous liver and kidney transplant in 2009.
I am so sorry about the itching. I did not know that URSO helped with that. Is your bile duct issue something that has developed since transplantation? Do you doctors say if this is a temporary situation?
Rosemary, Thanks for the welcome.My bile duct issue was post transplant. I hav a blocked right hapatic artery that was caused because the donor liver had a larger connection where it was attached to my body. They considered might have to do another transplant. Liver was functioning so well that they waited to see how I would do. It created it's own path of new blood flow so liver was good but bile duct suffered. They continue to put stints in but recently I had ERCP #10 or #11. They said if they cant get it stretched they might have to open me up again and do repair surgery to duct. We are hoping it doesnt come to this.
REPLY
jeanne5009
@jeanne5009
@jeanne5009
Posts: 159
Joined: Feb 04, 2018
@bikermike Rosemary, Thanks for the welcome.My bile duct issue was post transplant. I hav a blocked right hapatic artery that was caused because the donor liver had a larger connection where it was attached to my body. They considered might have to do another transplant. Liver was functioning so well that they waited to see how I would do. It created it's own path of new blood flow so liver was good but bile duct suffered. They continue to put stints in but recently I had ERCP #10 or #11. They said if they cant get it stretched they might have to open me up again and do repair surgery to duct. We are hoping it doesnt come to this.
Heres hoping everything settles in and you can avid the surgery..
Liked by Rosemary, Volunteer Mentor, bikermike
gaylea1
@gaylea1
@gaylea1
Posts: 218
Joined: Mar 09, 2018
@bikermike Rosemary, Thanks for the welcome.My bile duct issue was post transplant. I hav a blocked right hapatic artery that was caused because the donor liver had a larger connection where it was attached to my body. They considered might have to do another transplant. Liver was functioning so well that they waited to see how I would do. It created it's own path of new blood flow so liver was good but bile duct suffered. They continue to put stints in but recently I had ERCP #10 or #11. They said if they cant get it stretched they might have to open me up again and do repair surgery to duct. We are hoping it doesnt come to this.
@bikermike I am going through the exact same thing. My transplant was Nov 2018. They have been unable to place a stent in my bile duct after several attempts. Right now I have an internal and external drain. I also had to be opened up and reoperated on due to an artery that need to be regrafted. I'm hoping next ERCP will be successful.
REPLY
@jeanne5009
In reply to @dtknoxville
@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!