5 things every patient needs to know about kidney itching

Hugh Rayner, retired consultant nephrologist and co-author of Fast Facts: Kidney Itch, shares the things he thinks every kidney patient should know about kidney itching.

Kidney itch can have a huge impact on your life

To the average person, itching may not sound like the worst symptom you can have. But itching caused by chronic kidney disease (CKD) – clinically known as CKD-associated pruritis (CKD-aP) – is different to normal itching. It can feel deep in the skin and people often end up scratching so vigorously that they bleed.

If it’s severe, kidney itch can affect your whole life, including your mental health. People often say they feel very frustrated and self-conscious about the itching, and some become depressed.

It can affect the whole family and cause problems in relationships. As itching tends to be worse at night, it can ruin your sleep and your partner’s sleep if you share a bed. To make matters worse, people with CKD often also have restless leg syndrome and other sleep problems.

So you may struggle with fatigue, which can have lots of other effects, including making symptoms harder to cope with.

It’s important to take kidney itch seriously

Kidney itch is very common but people may not always link it to their CKD – in a survey, 17% of people who said they were always or nearly always bothered by itchy skin hadn’t reported their symptoms to their healthcare team.

And doctors may not ask about it – often in appointments, the focus is on other symptoms that may seem more important, so itching isn’t addressed. But for the reasons above, it’s a very important symptom to deal with, particularly if you’re severely affected.

Man in bed itching

Diet changes are unlikely to help...

It’s commonly believed that controlling the amount of phosphate in your diet can reduce itching (phosphate is a mineral found in a range of foods, including dairy and some processed foods).

People end up blaming themselves for itching, thinking they it’s down to their diet. In fact, there’s no good evidence a low-phosphate diet makes any difference.

On the contrary, trying to manage itching through your diet is likely to be stressful, putting a lot of pressure on you. And you may miss out on important nutrients found in these foods.

Kidney itch can come and go, so it can sometimes seem as though a diet change has helped, but it’s more likely that any improvement is just a coincidence.

... and antihistamines probably won’t work either

Similarly, there’s no evidence that antihistamines help. They’re useful for itching caused by allergic reactions when histamine is released, which is why healthcare professionals often suggest them. But kidney itch isn’t caused by histamine and trying antihistamines just delays you getting treatment that will help.

This is one of the reasons it’s so important to make a link between itching and kidney disease – if you have no other obvious cause for the itching, such as a skin condition, we can usually assume that CKD is the cause, so we’ll know antihistamines won’t be effective.

But there are effective treatments for kidney itch

Now the good news – there are treatments that help, and your itching can get better.

Basic emollient creams are useful in milder cases. They help to moisturise dried out skin, which can considerably ease itching.

To work out whether your itching is severe, it can be helpful to score it out 10, where 10 is the worst itching you can imagine. Scoring 7 or more suggests the itching is severe.

If you would be prepared to take regular medication for it, it’s time to talk to your healthcare team.

Gabapentin, pregabalin and a new drug called difelikefalin are drugs that your doctor might consider prescribing for chronic kidney disease-related itch. For more information speak to your kidney team.

The main message is there’s no need to put up with itching – please do talk to your healthcare team and get the support you need.

This patient information resource has been made possible with a financial contribution from CSL Vifor. CSL Vifor has had no editorial input into or control over the content which has been independently owned and created by Kidney Care UK.

Fast Facts: Kidney Itch is available to read for free on Amazon Kindle and also available in paperback.

Kidney Itch book cover