Hello,
I’ve been diagnosed 4 months ago and recently my symptoms got much worse: pale stool,
dark urine, extreme itchiness and yellow eyes. So far I’ve only seen a gastroenterologist that has been treating my UC. Does anyone know any PSC specialists in the UK?
Stefan,
Hello. I know that the diagnosis of PSC liver disease was quite traumatic to you as you think of your life and your family. I do want to give you hope that there is a future out there and that with good management of your PSC you can live a pretty normal life during the early years of diagnosis. The very first thing I would recommend to you is to go to a major hospital there in the UK that does liver transplants such as the Queen Elizabeth hospital and put yourself under the care of a hepatologist. This is a physician that specializes in the diagnosis and treatment of liver diseases. Most regular GI doctors are not fully qualified to deal with such a life threatening illness like liver disease. I want to direct your attention to a video link I will provide you of a patient with PSC in the UK that had a liver transplant at the Queen Elizabeth hospital. I’m not suggesting you are there yet, but hearing this patients experience who is one of your countrymen might be a comfort to you. Once you find a good hepatologist, there are medications they can prescribe to eleviate your itching. All of us here on the site have our favorite remedies for itching, but for me the only relief I found was by taking a medication called Rifampin. I took 300 mg twice a day for 4 years prior to my transplant. You might ask your GI or hepatologist about this medication when you see them. As far as the other symptoms you mentioned such as pale stool and dark urine, these all go along with liver disease. Make sure though that you are drinking plenty of water each day. Also, many patients who have PSC also either have UC or develop it later after diagnosis. You might also ask your doctor about Ursodiol. This is a medication that helps thin the bile so that it will flow better through the beaded strictures of the bile ducts. With the itching you are having you may need to have an ERCP to clean out your bile ducts. This is an endoscopic procedure that needs to be done preferably at the transplant hospital by a doctor that does this every day. It is a very invasive but effective procedure but needs to be done by a highly skilled advanced endoscopist. I wish you well and I hope you will feel free to post again any questions or concerns you might have. Here’s that link. This was from a course I took on liver transplantation through the University of Birmingham. https://www.futurelearn.com/courses/liver-transplant/1/steps/64848
Take Care,
Mark
PSC 2011 / Liver Transplant 7-2015
Hi stefen, if you visit www.pscsupport.org.uk there is a find a specialist link. You should be able to your nearest specialist from there.
Hope this helps.