Opinions needed!

Hello all,
I am a new member and wanted to get some opinions on my situation. I am a 53yr old male from Chicago. In May of 2015, I was diagnosed with Sjogren’s Syndrome.
I suffered from dry mouth and eyes which slowly improved over the past 2 1/2 years with help from meds (Cervillimine and Plaquenil). I was moving along pretty well until this past September when I started to experience itching on both sides of both feet, only when I got out of bed in morning and began to walk around. I originally wrote this symptom off as irritation, but when I used creams and the itching did not stop, I started to get worried and went to my GP. My GP took blood test which came back normal, but also remarked that I may want to visit a liver specialist to rule out problems. I also have been battling a constant type, upset stomach which I believe is due to the Plaquenil medicine that I must take. Anyway, after reading on internet, I saw the association between autoimmune, stomach issues, and PSC. I wanted to obtain opinions on my type of itching, what test should I try to take to help diagnose what is causing this itching, and if anyone can recommend a liver doctor in Chicago area. I have been reading many post on this website and I have to say, I am touched by the compassion that is extended to everyone. God Bless all … Mike

Hello Mike and welcome to our group. We are here for you and willing to answer any questions you have about PSC and liver disease in general. To answer a few of your questions. I did some research and just from the numbers of transplants they did last year, I think the University of Chicago looks like a good place to start for a liver specialist. You need to be seeing a Hepatologist, this is a doctor that specializes in the diagnosis and treatment of liver diseases. Not your local GI doctor but a specialist, preferably connected with a transplant center. Here are a couple of links. One for the transplant center at University of Chicago and then a list of hepatologists tied with them. Call one of them and schedule an appointment. They can do the appropriate tests to know for sure whether you have PSC or not.

  1. http://www.uchospitals.edu/specialties/transplant/liver.html
  2. http://www.uchospitals.edu/adult/FindPhysicianHandler.do;jsessionid=3D9A891EF492EEC2815EBE5FCBA8D7F8

There are a number of prescription based medications to treat the itching and some find relief with over the counter remedies. For my particular situation the only thing that worked for me was a prescription called Rifampin. I took 300 mg twice a day and it took care of my itching up to 98%.
The itching with liver disease is when there is an obstruction in the bile ducts of the liver that does not allow the flow of bile from the liver to the gut. Thus PSC causes a beaded appearance in your bile ducts and the bile has a difficult time getting around the beads. Sometimes they will do an ERCP and clean those ducts out which gives temporary relief.

I hope this will help get you started. Let us know how we may further serve you.

PSC 2011 / Liver Transplant 2015