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.
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.
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.
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:
- Medicines - never suffer with itch in silence when you have PSC. Tell your doctor. There are medications specifically for liver-related itch that can help. It is important to let your doctor know if your prescribed medicine doesn’t work, because other medicines work in different ways, and might suit you better.
- Keep your skin moisturised - your skin can feel dry, especially in homes with central heating. Emollients can sometimes help ease itch. Emollients are moisturising treatments applied directly to the skin to soothe and hydrate it e.g. Cetraben, Vaseline Intensive Care Aloe Soothe, and E45.
- Use anti-itch creams - anti-itch creams can provide some relief for a short time for some people. You can buy these over the counter e.g. E45 Itch Relief cream.
- Cool down - some people find taking a cool shower or bath helps with itch. Covering your skin in a wet towel could offer some relief. You can also make your own cooling cream by mixing menthol crystals with aqueous cream or buying it already made e.g. Dermacool. You can even buy cooling sprays e.g. Magicool Plus Itchy Skin Cooling Spray.
- Loose, cotton clothing - wear loose clothing or none at all if possible! Avoid potentially itchy materials like wool because it can add further irritation to your skin and make your itch feel more severe.
- Phototherapy (light therapy) - exposing the skin to certain kinds of light can help relieve itch for some individuals. Artificial light therapy is given in hospitals and some specialist centres, usually under the care of a dermatologist. Light therapy is not the same as using a sunbed and it is not recommended that anyone self-treats.
- To scratch or not to scratch? You should try not to scratch, but we know that’s impossible when you have itch. Make sure your nails (or whatever your chosen scratching implement is!) are nice and clean. Scratching helps because the action confuses the nerve endings in your skin. Patting or stroking also tricks the nerve endings and causes less skin damage.
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