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05-04-2014, 08:34 AM   #1
Emilyck718
 
Join Date: Feb 2014
Location: Vermont

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Liver Problems - PSC

I was diagnosed with Crohns in 1997, as well as primary sclerosing cholangitis, which affects my liver. I've been told PSC is a rare complication of Crohns. Between the two, it seems to me that the liver problem is more scary. I get strictures in my bile ducts that result in the need for balloon dilutions by ERCP and my liver enzymes are always high. I frequently get liver attacks that are quite painful. I hate reading about it because it almost always ends with "high likelihood of liver transplant eventually". I worry more about my liver issues eventually taking me out than the crohns.

I don't know a single other person with this liver complication so I guess it would just be nice to connect with someone who is going through the same thing. Are any of you out there?
05-04-2014, 09:35 AM   #2
highlandsrock
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Hi Emily

I totally sympathise with your fears. I won't go into all the details here - if you're interested have a look at my blog - but when I was first diagnosed with PVT/PSC in June 2012 the doctor actually told me not to look it up on the internet! Well I took her advice for a short while but that didn't last long and after the "transplant is inevitable" message had been repeated a few times I came to exactly the same conclusion as you - in a "which is scariest" competition PSC beats Crohn's. (That's based on my experience of Crohn's which is relatively mild when compared to those who have had multiple surgeries, been unable to work etc).

My PSC must be early stage and I don't suffer from the problems it causes you so it has been quite easy to "park" the problem for the time being. I'm trying to do the same with Crohn's so I can get control of my life back and be in a better position to deal with the situation if symptoms get worse.

BTW - you've probably already found this statistic. This is a quote from the UK PSC Support Site - "There is a close association with PSC and Inflammatory Bowel Disease (IBD), with around 70% of PSCers having IBD. It is possible that the toxins enter through the leaky gut, and gut lymphocytes (cells involved in the body’s immune response) attack both the gut and the bile ducts as well."

Crohn's really is the disease that keeps giving. Keep in touch
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05-04-2014, 01:11 PM   #3
Emilyck718
 
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So I'm not alone after all! Thanks for responding! How do I get to your blog? I'm glad to hear your PSC doesn't cause you any problems at the moment. I've had periods of time when it's fair, but I've averaged needing a balloon dilation of my bile ducts about once a year - sometimes more often, sometimes less. I just wish it wasn't such a scary diagnosis. I read a lot about the average person needing a transplant in about 15 years. I just entered my 16th year of diagnosis and I'm happy to say that I don't need to be on a list yet though! Still, my husband and I are trying to conceive at the moment and it haunts me that things could get worse at any time.

It's interesting that you say that your Crohns isn't all that bad compared to some. I have the same experience! Certainly I have my problems with it, but I have not had any surgeries or major blockages like some have. I haven't had great luck with meds though. I've been through an awful lot of them and recently switched from Humira to Cimzia because I developed antibodies to the Humira.

I've often wondered if this is a chicken and the egg situation. Which came first, Crohns or PSC? I hate them both, but I'm afraid of the PSC more than the Crohns.
05-04-2014, 01:18 PM   #4
highlandsrock
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To get to my blog click on the link in my signature or go to www.crohnoid.com.

There's a list of chapters on the right hand side. Chapter 8 is the one where the PVT/PSC reared it's ugly head.
07-10-2014, 04:23 AM   #5
Kela80
 
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Hi Emily. I'm 34. Diagnosed with psc 16 years ago. Just 3 days ago got listed on the transplant list. I've had most my large bowel removed and had a stoma for 18 months which got reversed May 2013. Did great for 8 months the billirubin stayed over 100 for a few months whereas in past would come back down. Psc hasn't caused many issues apart from abonormal lfts, fatigue and more recently as cites and portal hypertension. I think the anesthetics and infliximab made my liver worse .

Even now I don't feel like I need a transplant but I understand with the ascites the liver is not doing well and will get worse. The docs don't want me getting to sick if they can avoid hence why I've just been listed.
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33yo Melbourne Australia
Primary Scelrosis Cholangitis 1998
Crohns 2000
Divertculitis 1999
Stoma 2011
Reversal 2013
07-27-2014, 06:42 PM   #6
Jajabinks
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Hi guys, I have dilated common and intrahepatic bile ducts. Are these symptoms of PSC? Should I be worried? Hope you are all well
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07-28-2014, 07:17 AM   #7
Kela80
 
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Hi Jajabinks. It could be. What lead you to get the scan? What symptoms do you have? What are your liver function tests like?
07-28-2014, 07:25 AM   #8
Jajabinks
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my liver functions were fine last they checked in June. What does this all mean?
07-28-2014, 07:28 AM   #9
Jajabinks
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I was in the hospital for an obstruction n the found the dilation in the scan. They then sent me for an MRCP and upper endoscopy to look at it closer.
08-12-2014, 04:16 PM   #10
Jeffpscuc
 
Join Date: Aug 2014
No, you're not alone. I was diagnosed in April 2013 with moderate to severe psc. Luckily, I have not had many problems, but I am very sensitive to any tiny pain in my abdomen.

PSC progresses very slowly, but things can go wrong quickly. A website I can recommend is livingwithpsc.org.
07-24-2015, 10:16 PM   #11
Joćo
 
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I have dilated common and intrahepatic bile ducts too, but all my liver function tests are excelent at the moment. I took a look at the images and saw really discreets dilatations/arrows. I'll do two more MRCP in the next two weeks.

The good news:

n March 2015, Biotie announced (Stock Exchange Release) the start of patient enrolment into a Phase 2a clinical study evaluating BTT1023 in primary sclerosing cholangitis (PSC). PSC is a progressive immune mediated biliary disease characterised by bile duct inflammation and fibrosis, and accompanying hepatic fibrosis, that frequently results in the need for liver transplantation. The study is being funded through the Efficacy and Mechanism Evaluation (EME) Programme, a Medical Research Council and National Institute for Health Research partnership in the UK. The grant holder and Co-Investigator for the study is Professor David Adams, Director of the NIHR Biomedical Research Unit in Liver Disease and Centre for Liver Research at the University of Birmingham, UK.

The BUTEO study (BTT1023, a human monoclonal antibody targeting vascular adhesion protein (VAP-1), in the treatment of patients with primary sclerosing cholangitis) is being conducted in the UK and is an investigator-sponsored open label, single arm, multi-centre study that will evaluate efficacy, safety and pharmacokinetic properties of BTT1023 in 41 patients with PSC. Patients will receive BTT1023 via intravenous infusion every two weeks over an 11 week treatment period. The primary efficacy endpoint is a reduction of elevated levels of alkaline phosphatase, a blood biomarker of bile duct inflammation; secondary endpoints include various measures of liver injury and fibrosis. The two-stage study design includes a pre-planned futility analysis. Based on current estimates, it is expected that the requisite number of patients will have been treated by the end of 2016 to enable the futility analysis to be completed.
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