It is useful to know what symptoms you might develop but in the course of your disease it is very unlikely that you will suffer from all of the symptoms listed below and certainly not all at the same time. It is also worth remembering that many of us go for years relatively symptom-free.
If you are unsure about any of your symptoms, seek medical advice.
What stage is my PSC at?
People often ask this question. The reality is that the speed at which PSC develops varies from person to person and it is often impossible to predict accurately how quickly the disease will progress in a particular person. Currently there are no tests that accurately “stage” the disease. Imaging of the liver together with blood tests can give doctors an indication but researchers are actively working to find new tests that predict accurately the stage and prognosis of the disease.
In fact, the state of your liver isn’t actually what’s important; it is how well it functions, despite its damage.
Typically the disease progresses through four stages:
- Stage 1 lesions start to develop in the bile ducts.
- Stage 2 the lesions become more established and show up on MRI scans.
- Stage 3 bile ducts undergo degenerative processes and disappear.
- Stage 4 the liver becomes permanently scarred, a process called cirrhosis.
Although these stages are useful to understand, the progression of the disease may be of little help to the individual patient. Some PSCers can have ‘Stage 4’ disease with a liver that is functioning well, and not causing any major symptoms whereas others could be at ‘stage 4’ and on the liver transplant list. The important thing is how the liver copes with the scarring and whether it is able to continue to function.
The fact that each PSCer’s symptoms are slightly different, that the scarring progresses at different rates, and the fact that many PSCers are asymptomatic for many years makes PSC very difficult to study.