Hi everybody.

I never knew I was a PSCer but all of a sudden, my body began to itch. I couldn't believe it, I was just lame to do anything.

I took medications such as Cholysteramine powder, Rifampine, Doxepine,and high dosage Ursodeoxycholic acid(2000 mg a day), and when all were ineffective, I took the Naltrexone. I was hospitalized for a fortnight and underwent ERCP, liver biopsy and also colonoscopy. There, I found something new about myself, that I had a new disease and that was Crohn's disease, accompanied by osteoporosis, splenomegaly and stomach bleeding.

I was diagnosed with severe cirrhosis and fibrosis of the liver. I was totally in pain, mentally and physically. Even now, I can't tell you what I was going through. I couldn't sleep for a whole six-months-period before the transplantation, and I think the only thing I was able to do was itching myself. I can't even imagine agin ...

I had been killing myself day and night by itching when I underwent the hepatic transplantation. As soon as they had operated me, all the pruritus went away. My attending physicians never believed that the pruritus went away immediately after the operation, they accused me of hypocrisy ...After transplantation I got the Cytomegalovirus (positive with 11,000 copy, and a terrible fever) and EBV, I was hospitalized again for a long time.

Anyway, by the end of this month, I will have been taking these medications for six months; Mycophenolate mofetil, Prograph, Ursodeoxycholic acid, Co-trimoxazole, Prednisolone, Mesalazine and Calcium D. I'm OK now, I'm just unable of closing my eyes without fear of itching myself again ...

Thank you for reading,

I’m sorry to hear everything you are going through. That sounds horrible. My had the horrible itching. He’s lower legs & feet bled because he scratched so much. The itching & vomiting are what led us to the Dr.'s. I had never heard of this disease before. I am thankful you found a recipient. I hope & pray that moving forward you will be symptom free & be able to live a full life of health, happiness & enjoy each day to the fullest!
Blessings & well wishes to you!


Wish you the best

Did the nailtrexone help you at all?

Maybe it was the only thing that let my wounds heal. It helped me sleep.
But you know, Naltrexone is an opiate antagonist, it pacifies but in a different way. If you take it, you'll become dizzy and sleep due to the dizziness most of the time.
I became numb, like how it feels due to cold or anesthesia. Dizziness, nausia and loss of appetite made me put it away, I prefered to increase the Rifampine and Ursodiole dosages.

It's one of the drugs that help you die better.

Does anyone have more info on LUM001, the new drug in clinical trials to combat the horrible itching?? I am wondering if it’s possible to get some without being in the trial. I had a liver transplant 8 years ago, but my PSC returned in the new liver a year ago. I’m getting that awful itching again & am hoping I can do something about it fast. Please reply with any info or advice.
Thanks! It’s great to be a part of this supportive community :slight_smile: wishing everyone a healthy 2014!!!

Did you take ursodeoxycholic acid in these 8 years?
How high is your Bilirubin now? (D/T)

I’ve been taking urso for the past year since I got a BILIARY DRAIN (anyone else have one?? Since I had a transplant, they can’t stent my bile duct with ERCP & needed to give me an external drain instead).
My bilirubin was 1.1 on my last blood test a few weeks ago. Just went this morning for blood work to see what could be causing the itching these past few days…

The day after transplantation, my attending physicians prescribed me Ursodeoxycholic acid and prednisolone for the rest of my life. They said; there's gonna be always the probability of recurrent PSC.

Maybe you should have taken it all this period.

My direct and total bilirubin were 7.5 and 18, respectively. Rifampin was really healing for a period,

Here's my recommendation for you; Have you ever tried Rifampin? It may redden your urine but don't worry, it helps you.