Itch (also called pruritus) is one of the most commonly reported symptoms by people with PSC. Itch can seriously impact on your quality of life.
VISTAS Clinical Trial
A clinical trial called VISTAS is evaluating a drug and its effect on itch. Find out more.
Don't ignore sudden itch or itch that is not resolving even with medicine.
Let your PSC doctor know so he or she can make the appropriate assessment and investigations.
What can your doctor do about itch?
Why assess itch?
The cause of itch in PSC is not clear and several mechanisms have been proposed, including increased levels of bile salts in the blood 120,121. Sudden onset of itch is cause for concern and you should contact your PSC doctor as soon as possible to let them know. A range of medicines are used to control itch, however in certain cases this may be a very difficult-to-control symptom.
Assessment and management
Your doctor should ask you about itch and consider medicines outlined in the BSG/UK-PSC and EASL guidelines. If a medicine doesn’t resolve your itch, you should let your doctor know, so that a medicine that works in a different way can be considered.
In the UK, cholestyramine (Questran) is considered first, with rifampicin and naltrexone as second line therapies. The consistency of cholestyramine makes it somewhat unpleasant to take, although there are different ways you can take it and it is also occasionally available in tablet form. You can also disguise the texture by adding it to food.
There have been concerns about the use of rifampicin in liver disease patients in the past. A 2018 study looked at 105 adults with PSC and PBC and found that 95%, including those with jaundice and advanced liver disease took rifampicin safely. The researchers conclude, ‘In the absence of alternative safe, licensed and equally effective agents, clinicians may consider, the use of rifampicin in cholestatic pruritus’ 122. In some cases, sertraline is also attempted.
At each review appointment or earlier if itch is not resolved.
Tips from people with PSC
Itchy skin can be a sign that there is a problem with your liver. If you get persistent itch out of the blue, you should contact your PSC doctor so they can investigate. You can keep track of your itch with the PSC Support App.
We understand. Itch is intolerable. It prevents and interrupts sleep and it drives you crazy when you’re awake. What can we do about itch? We’ve put together some tips on managing itch from people with PSC who’ve found ways to help relieve itch, or at least take the edge off it.
Thanks to our Facebook group members who have shared their tips on managing itch: