If you have just been diagnosed with Primary Sclerosing Cholangitis (PSC) you are probably shocked, worried or angry; possibly all three. But you should not despair. While PSC is a serious illness, it does not mean that you cannot continue to enjoy life. You should not allow PSC to define who you are.
Why Googling PSC doesn’t help
Anyone that has Googled ‘PSC prognosis’ will have read some alarming statistics about how long we have left to live. Karlsen writes that endpoint of death or liver transplantation is between 12-17 years following diagnosis. ‘Following diagnosis’ is key here, since for so many patients, PSC is discovered during routine tests while the patient is asymptomatic. The fact that PSC can go unnoticed for years before actual clinical diagnosis means that you cannot apply the overall “prognosis figures” to your case. Many patients will have much better long-term survival rates than the research papers suggest. The important thing is to discuss your case with your doctor.
We have no way of knowing when the disease really started in any of us. PSC is usually discovered by accident. For example, PSC can be diagnosed after MRCP following abnormal results in liver blood tests carried out during the routine assessment of IBD. There might be no overt symptoms relating to a liver problem at all. However, other patients present with non-specific symptoms such as fatigue or abdominal pain, or symptoms related to strictures such as jaundice, pruritus and acute cholangitis. Patients could have had PSC for years without even knowing it. Not having an exact onset date makes determining a general prognosis or progression pattern for PSC difficult, hence the hugely variable statistics on the ‘net. So you must take any statistics that say PSC sufferers have X years from the time symptoms appear to either death or liver transplant with a very large pinch of salt.
- Karlsen T, Schrumpf and Boberg K. (2010) Primary Sclerosing Cholangitis. Best Practice & Research Clinical Gastroenterology 24(2010) 655-666