Itching
If you have blood cancer you might experience itchy skin. Itching can be a symptom of blood cancer or it may be caused by the treatment you are having. Itching can happen with any blood cancer, but it is more likely to occur if you have a type of myeloproliferative neoplasm (MPN).
What is itching?
Itching (pruritis) is an uncomfortable prickling or burning sensation that makes you want to scratch your skin.
On pale skin, you may also notice a red rash or marks that look like bites or pinpricks. If you have black or brown skin, the marks may show as purple or as a darker colour than the skin surrounding them. These marks may appear in a specific area (localised) or across your whole body.
Itching itself can range from mild to severe and can occur anywhere on your body. Some common areas where people with blood cancer experience itching are on the torso, back, legs and arms. The sensation can come and go in short bursts or it may last for long periods of time.
Itching as a symptom of blood cancer
Itching is a common symptom of some types of blood cancer. You can read more about general signs and symptoms of blood cancer here.
Some people diagnosed with MPNs – polycythaemia vera (PV), essential thrombocythaemia (ET) and myelofibrosis (MF) – will experience itching, but it is important to note that it can occur with any blood cancer.
We don’t know exactly what causes itching, but it’s possible it may be triggered by a type of cell called a mast cell releasing a substance called histamine. Histamine can affect the activity of small proteins called cytokines, which are known to cause an itchy sensation.
For some people, taking anti-histamines may help to reduce or get rid of the itch. If your itching is caused by cell activity related to your blood cancer, starting treatment can also lessen your symptoms over time, but this may not be immediate.
“I had itching for about 6 months prior to diagnosis, with it gradually increasing in severity. It’s hard to describe how deep in your bones the itch felt. Shortly after I then went on chemotherapy and haven't had any problems since."
- Carole, 61, diagnosed with non-Hodgkin lymphoma (NHL) in 2020
Itching as a side effect of treatment
Itchy skin can also be a side effect of some blood cancer treatments. You might become itchy straight away after starting a new treatment, or the symptoms could come on gradually.
If you are being treated with an injectable form of chemotherapy such as azacitidine, you may experience itchy skin at the site of the injection. If this happens, you can ask your hospital team for advice on how to treat the itch.
You might also find that some types of treatment make you more sensitive to the sun (photosensitive). This means that you may feel itchy or uncomfortable when you are outside in direct sunlight. Other people might find that exposure to sunlight actually helps with their symptoms. Either way, it is very important to stay safe and protect your skin from sun damage.
Although itching can be unpleasant, it’s worth remembering that the treatment you are on may still be the best option for you. Sometimes, treatments that aim to avoid one side effect can cause another that is just as difficult to deal with.
If you do develop itching that is too hard for you to manage, your hospital team will be able to discuss your options with you. You may be able to change your treatment frequency or dosage, or swap to an alternative treatment if there is one available.
Other causes of itching
Not all itchiness will be related to blood cancer or its treatment. Common causes of itchy skin include allergies, eczema, hormone changes or even insect bites. The environment in which you live and work (for example, if you are exposed to certain chemicals) may help to explain why you feel itchy.
People with kidney or liver disease may also experience itchy skin. This is caused by a build-up of waste products in the blood as a result of poor kidney or liver function.
It is also possible to experience itching with no clear underlying cause.
Always tell your GP or hospital team about any new symptoms, including itchy skin. They can refer you for more tests or arrange for you to see a dermatologist if necessary.
Common triggers for itching
Most people say that having warm, wet skin makes itching worse. Having a hot shower or swimming in a heated pool can trigger itching which may last from minutes to hours afterwards. The medical term for this sensation is aquagenic pruritis.
Becoming too warm or sweaty, for example in the summer or during exercise, can often bring on an itching attack. Itching can also be triggered if the air around you is especially dry or humid, or if you experience a rapid change from one to the other.
You may also get itchy around tight items of clothing such as elasticated socks and underwear. Like scratching, the friction from your clothes can make the itch worse as your skin becomes even more irritated.
A few people have also told us that they suffer from itching when their blood sugar or iron levels are too low. You can find more information about eating well with blood cancer here.
You might want to keep a diary of when you become itchy to see if you notice any personal patterns. It would be helpful to show your hospital team this record as well.
“I would get really itchy when my skin got wet. If I had to have a shower or go for a swim or something it would be very uncomfortable afterwards. Now, if I have a hot shower, I finish off with the water as cold as I can stand it. That works for me."
Jeremy, 67, diagnosed with PV in 2018
How can my hospital team help with itching?
As with all symptoms, it’s important to discuss itchiness with your GP or hospital team if you haven’t already. They know your individual circumstances and can talk to you about the benefits and risks of any potential treatments.
Some options that you might be able to explore with your team include:
- prescription anti-histamines
- medication to treat nerve pain, for example gabapentin
- targeted therapy drugs such as ruxolitinib, if you are eligible for this type of treatment
- changing the dosage or frequency of your current treatment
- anti-inflammatory medication such as corticosteroids, which can have side effects so may not be suitable for all
- light therapy (phototherapy) – this involves direct exposure to either sunlight, ultraviolet or artificial light at controlled wavelengths for a set period of time
- joining a clinical trial
- being referred to a dermatologist if your symptoms are severe or ongoing.
Having a good relationship with your treatment team makes a big difference. If you find it hard to know what to say, you could try jotting things down in a notebook to take with you. Our Support Service team are also available by phone and email if you want to talk things through before your appointment – call them on 0808 2080 888, or email [email protected]
“I’m a self-advocate and it definitely helps. I tell the doctors all the information they need to know about me and I know when to push them about something. It’s really important to understand your own symptoms so you can help other people understand."
- Iain, 72, diagnosed with Hodgkin lymphoma (1984) and WM (2012)
What can I do to soothe the itch at home?
To ease itching at home, you could try:
- Having short baths or showers using cool water, before patting yourself dry with a soft thin towel.
- Using sensitive or “hypoallergenic” wipes to wash yourself if you can’t bear to get wet.
- Covering your skin with a cool damp cloth or wearing a damp t-shirt during a flare-up.
- Applying a thin layer of emollient-based moisturiser or lotion (for example E45 cream) as often as you need it.
- Lightly pressing, squeezing, or tapping on affected areas of your skin instead of scratching.
- Meditating or doing breathing exercises to distract yourself.
- Focusing on an activity that keeps your hands busy, such as playing an instrument or drawing.
- Applying a menthol-based cream which may help to numb any burning sensations.
You might be curious about alternative therapies such as CBD oils or acupuncture, or whether certain foods, herbs or supplements could help.
Although it can be tempting to try everything, there may not be any scientific evidence behind any of these options. It’s important to discuss anything you’re thinking of trying with your hospital team first, so they can consider how it may affect you and the treatment you’re already receiving.
Preventative measures
There are also lots of preventative measures you can take which might help reduce how often you itch. These include:
- Choosing fragrance-free versions of products like soap and laundry detergent, and avoiding things like aftershave and perfume.
- Swapping to cosmetics marked “hypoallergenic” or “for sensitive skin”.
- Using an electric razor to shave and avoiding waxing, threading and any depilatory hair removal creams.
- Drinking lots of water to keep your skin hydrated.
- Wearing light, loose-fitting clothes and avoiding anything scratchy such as wool.
- Using a humidifier or dehumidifier depending on how moist the air inside your home is.
- Staying inside or in the shade during hot sunny days, especially when the sun is at its highest.
- Keeping your nails short to avoid breaking your skin.
- Wearing a pair of light cotton gloves at night to avoid scratching in your sleep.
- Creating a relaxing bedtime routine that helps prevent anxiety and distracts you from itching, such as reading a book or meditating until you fall asleep.
“In the two years since I was diagnosed, I've found a good balance between taking antihistamines and using coping mechanisms like mindfulness and good sleep hygiene. Accepting that itching is now a part of my life really helps me mentally.”
David, 43, diagnosed with prefibrotic myelofibrosis in 2021
Looking after your physical and mental wellbeing
The physical sensation of itching can be very difficult to cope with. You may feel unable to go about your normal life because you are itchy, or are afraid you might start to itch. This can make it more difficult for you to plan social commitments and enjoy leisure time, both of which are important to your wellbeing.
If the itch is worse at night it can make it hard to get a good sleep. Being tired will affect your energy levels and could make other blood cancer symptoms such as fatigue or brain fog worse. It may also become harder to manage any other conditions you have.
In some cases, repeatedly scratching your skin could also lead to an infection. Infections can pose a serious risk to your overall health and blood cancer treatment, so it’s important to be aware of the symptoms and look out for yourself. You can find out more about this on our understanding infection page.
It is normal to feel distressed and anxious about itching if it is affecting your quality of life. Read our living well with blood cancer pages for more information and support, or join our community forum to speak to people who understand what it’s like.
You can also call our Support Service for free on 0808 2080 888, or email [email protected]
Financial considerations
It can be hard to stick to a normal schedule when you suffer from itching. If you have a job, you might have to miss work or be late, and you might find it difficult concentrate whenever the itch is particularly bad.
Living with itching can also be expensive if you want to try out new products for yourself or your home. Worrying about work and money could make you feel worse overall, and it can be hard for your loved ones to see you struggling.
“I found explaining the sensation in a PIP assessment so hard, because it's not like you're in a wheelchair or you’re struggling to walk," says David, who was diagnosed with prefibrotic myelofibrosis in 2021. "But itching is just as physically debilitating. I was late to work and social functions because I’d be lying on the bathroom floor until I’d decompressed from the burning. Knowing how to articulate that and make people understand what you’re going through is really important.”
If you need extra support, our money and work pages may be able to help.
Explaining itching to others
One of the most difficult things about itching can be communicating how it really feels. A lot of people struggle to describe the sensation and are worried that they won’t be taken seriously.
It may help to come up with some words or metaphors you can use to help others understand. Explaining how and why the itch is different to ‘normal’ can be a good place to start.
For example, some people have found it helpful to say it is "burning", "tingling" or "painful" rather than "itchy". Others have told us it seems like insects are crawling around their bodies. You may feel that the itch is inside your bones, rather than on the surface of your skin.
It’s also a good idea to tell people how itching impacts your life and how it makes you feel emotionally. Don’t be afraid to ask for support from your loved ones if you need it.
“It feels to me like you've got hairs pushing through your skin again, like in puberty. That sounds gross, but it's probably the easiest way of describing it.”
- Richard, 60, diagnosed with PV in 2023
More tools and support
If you have any questions about itching, or if you’d like to talk more about how it affects you, you can call our Support Service for free on 0808 2080 888 or email us at [email protected]
This information has been accredited with the PIF TICK, the UK's only quality mark for trusted health information.
Last full review 2023. Next full review due 2026. We make factual updates to the information throughout this period.
Thank you to Consultant Haematologist Donal McLornan for checking the medical content of our itching information, and to Clinical Nurse Specialists Jodie Nightingill and Kirsty Crozier for their guidance and support. Thank you also to Jeremy, David, Richard, Iain and Carole for their insights into itching and helping us with this information.