Impact of pruritus in primary sclerosing cholangitis (PSC): a multinational survey
Thank you to everyone who completed this survey in 2021 about itch conducted by Mirum Pharmaceuticals Inc with PSC patient organisations from around the world. The results were presented at the 2022 EASL International Liver Congress, a conference for healthcare professionals and researchers interested in all things liver.
What did we learn?
482 individuals affected by PSC responded, and of those, nine out of ten had experienced itch due to PSC one or more times. A third were currently experiencing itch. Nearly half reported the itch episode lasted at least a month.
Respondents were asked to rate their itch severity on a scale of 0 to 10, with 10 being the worst itch imaginable.
Itch severity was associated with a higher degree of reported sleep disturbance and worsening fatigue, with 63% of respondents indicating that evening and night-time were the worst times of the day for itching.
Itch was also associated with mood changes, including but not limited to anxiety, irritability, and feelings of hopelessness in more than half of respondents.
Half reported that itch led to disruption of day-to-day responsibilities and 22% reported missing school or work.
The most commonly used medicines to treat itch were antihistamines (46%), UDCA (39%), Cholestyramine (39%), topical creams/ointments (28%), and Rifampicin (19%).
Half of the respondents (235/482) reported using two or more different medications to try to control itch but three quarters described only partial or no relief.
Uncontrollable itch is recognised as having a major impact on quality of life. So much so, that uncontrolled itch is an indication for liver transplant in the UK. There is an urgent need for effective medications to control itch in PSC. If you are experiencing itch, you should always let your PSC doctor know. Equally, if your itch medicine isn’t working, let your doctor know. There are several different itch medications available and each works in a different way, meaning that when one doesn’t work, another might.