A quick hello

Hello everyone, i am Paul and i have been told recently i have psc and been in for few tests but had the biopsy which has now confirmed this. I am so glad to final get answers to a long period of doctor appointments and visits to the hospital.

Now i am searching for information there is a lot of scary info and difficult to not self diagnose. After my last MRI i was told to wait for appointments but i am glad there is groups that can help.

What do i need to watch for and advice about pain is what im looking at just now. My pain is in the stomach just bellow the ribs on the right and have been feeling this since the biopsy, also feeling a pressure pain 2 -3 inch to the right of the belly button but slightly lower.

My story and medical journey.

I suffered from an over active thyroid between 14 - 16 years old and had this removed also just after this, i had my appendix out.

Many visits and blood tests later i am now 44 and
Tiredness and no concentration pushed me over the last few years to keep going back to get answers. At the momment mussel pain is the hardest as daily struggle.

My readings from blood tests were high and referred to a doctor at Dundee royal infirmary she has been good up to now and has assured me my younger years of binge drinking through college has not caused this.

I have to admit i was the first to link drinking to the disease now knowing this is not the truth every person i inform this is what they say. Awareness of liver conditions needs education and a cure also.

Thankyou for reading

My doc never got excited about the pain I had. My pain was, for the most part, occasional, maybe several times a day, but there was one time it put me in the hospital-I could not raise my legs to get into bed. For the most part, I learned that is something that pacers have to learn to live with.

What caused my doc to do something was when it was based on blood work. A high bilirubin and jaundice would generally lead to an ERCP to unclog a bile duct to prevent or fix a cholangitis attack.

Lot of pscers have fatigue in varying degrees; some horrible, some low-grade. There were plenty of evenings where I would come home from work and sleep for an hour and a half.

I am not sure that pain in muscles is specifically a symptom of pcs. Folks, correct me if I am wrong. But pain in the right upper quadrant of the abdomen (RUQ) sure is a symptom.

Is the doc at Dundee a liver specialist or a GI? Please get to see a liver specialist/hepatologist when and where you can.


Hi Paul and welcome to this PSC community. We hope that the information we can provide will be helpful to you. I agree with Jeff that right upper quadrant pain is a sure symptom of liver problems. Then it will also start going around your right side to your back and be very uncomfortable. It’s not a sharp pain but a dull nagging pain for the most part. This usually was an indication to me that an ERCP was needed soon. If you have copies of your last CMP labs that would help us get an idea of your MELD score.

Since you are from the UK, I want to share with you a response I gave to another person from the UK a year or so ago. I’m just going to paste it in so if any of it doesn’t apply hopefully the information will be helpful. Be sure and watch the video link as well. It’s not the end of the world but it is a disease you need to stay on top of, keep your family very well educated and informed about, etc. You will need them especially as things turn worse in the future.

Here’s the post,

"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,
PSC 2011 / Liver Transplant 7-2015"