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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.
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!
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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.
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.
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..
@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.
@bikermike Hopefully they will be able to stretch the ducts to avoid another surgery. I imagine that's the last thing you want, to have to go through surgery again. I know it would be for me.
My friend had 2 ERCPs done in a week Finally they transferred him to a hospital that did a EUS Endoscopy with ultra sound. They removed a 9cm gall stone from his common bile duct!
Third time is the charm…good luck to you
gaylea1, I am sorry to hear you are going through it too. They kept me on the transplant list for the first 1 1/2 yrs to 2 yrs in case they had to give me another liver. They told me if they had to open me up it would be better to do sooner rather than later. They put me o. Blood thinners for 18 months and said luckily they worked to create new blood flow to artery. When I asked if it was going to be like this from now on, the doctor told me that ERCP was something they can continue but ultimately they would have to discuss to open back up and think about the risk outweighing the reward. Where did you have your transplant done. I had mine in Phoenix and Dr. Singer did my surgery. He is a great guy. They have such a great team and I totally trust their decisions. Please keep me posted how you are doing. If you have any questions or just want to talk I am here. Very nice to hear from you.
@bikermike Hi there. Thank you for your encouragement. I don't know if they will continue trying the ERCPs. It has been mentioned that perhaps another transplant may be a possibility. I had my transplant done at the transplant clinic in London Ontario at the University Hospital. We have a whole floor and medical team dedicated to transplants. My next ERCP is scheduled for Wed Mar 20th. Last 2 attempts ended with me being hospitalized for severe pancreatitis. Very painful and no food for 8 weeks. I'm still recovering. I'm praying this 3rd attempt is successful.
I hope that you won't need a second surgery. But if you do need it, take comfort in knowing that at least there is an alternate plan for your recovery. I do not have a bile duct due to my bile duct related liver disease. My surgeon performed (in my laymans terms) creative plumbing that connects to my intestines. It works very well. At 1 year post transplant, I did need and to have a surgical repair because it got kinked in a small gap in my intestines. I don't know what your surgery would be like, but for me that repair surgery was much easier for me.
I am happy hat you saw this post, @gaylea1. I am sending my strongest wishes your way for successful results when you have next ERCP. Are you at home now? Do you know when you will have the ERCP?
@rosemarya Hi Rosemary. I am at home niw building up strength. My next ERCP is this Wed. Praying this time is the charm.
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