At MPN Voice patient forums, questions about itch, (pruritus) are probably one of the most common, and it’s well documented that itchy skin is a common symptom of myeloproliferative neoplasms (MPNs) in particular in polycythaemia vera (PV).
Pruritus is defined as an unpleasant itching sensation that leads to intensive scratching and MPN patients often suffer from water induced itching (aquagenic pruritus). Patients report feeling moderate to severe itching, burning, pricking or stinging after contact with any type or temperature of water. A bath or shower, a swim in the sea or a swimming pool, and even sweat can provoke the symptoms. Arms, legs and trunk are usually the worst affected. Symptoms can be seasonally dependent and vary from summer to winter.
In other patients dry and uncomfortable feeling skin sensations can be experienced at times during treatment for MPN.
An MPN specialist nurse advises
As a first step, have a talk with your GP and haematologist and ask them to verify that there aren’t any other causes for this problem.
Thyroid disease can cause dry skin, and thyroid problems may relate directly to interferon if you take that medication. Iron deficiency can also cause dry skin.
Check that you have not changed the soap or detergent that you use. Some soaps cause irritation.
Stay hydrated by drinking lots of water. Tea and coffee, caffeinated fizzy drinks and alcoholic drinks can be dehydrating, so you may need to reduce consumption and/or drink more water.
Use an emollient soap or a soap substitute. Find a good moisturizer and use it often.
Patient stories
Itchy skin is a common problem for people with PV and some patients have found non-medical ways to relieve these symptoms. There are no guarantees that these will help everyone, but if you do suffer with itch it may be worth considering some of these ideas submitted by two MPN patients who have PV.
Louise who describes her itching as worse than childbirth advises:
- Not showering/bathing but using either a bidet, or if unavailable/away on holiday, just a couple of inches in the bath to sit in.
- Use baby wipes to gently clean legs, arms, neck, torso and back.
- Wash your hair over the bath.
- Avoid swimming.
- Avoid leg waxing, even shaving your legs can spark off a bad bout of itching. A spoonful of Piriton syrup about 30 minutes beforehand can be helpful.
- Always use some sort of cream daily on arms and legs – e.g. Vaseline Intensive Care.
- Drink lots of still water a day on top of other hot/cold beverages.
- EXERCISE!
- Avoid excess sugar. Chocolate in large quantities seems to start off itching.
- Avoid constipation which can also lead to itching.
- Tights, wear 7 denier cool wear for summer, and in the winter the ‘Nora Batty’ type 100% cotton.
- Rubbing/massage/spa treatments are a no-no, with the exception of facials.
- SUN! After a week in Andalucia the itch disappeared.
- Piriton syrup. One teaspoon, not every day, but when the itch starts up.
- Avoid rushing about and try to avoid stress.
- Overheating in bed and scratchy bed linen can also set off a bout of itching. For holidays, Louise ensures that she packs a low tog duvet and Egyptian percale sheets and duvet cover, washed in Eco organico anti-allergy liquid detergent.
- Her final tip is ‘If you do itch – try not to scratch or rub the affected area, simply press firmly – or go for a run!’.
Lynda, another PV patient shared her experience of managing itch:
Lynda was diagnosed with PV and after four years with the condition developed a very severe form of pruritus; stinging, pricking and burning pain as soon as her skin got cool or cold.
Ordinary daily personal tasks became difficult and painful, e.g. dressing and undressing, getting into a cold bed or entering a cool or air-conditioned space. Worst of all was bathing or showering which she had to stop along with swimming and wearing summer clothes. Even the cooling effect from her own sweat drying on her skin made her body hurt.
At the suggestion of her haematologist, she tried various medications and all the advice available about ways to take a bath in the hope of reducing the reaction. They even tried doing fewer venesections as he thought that she might be mildly anaemic and people with anaemia sometimes experience pruritus. None of these treatments worked and they seemed to have run out of options. In desperation her husband and Lynda went back to the internet for help and did some searches on aquagenic pruritus. After a while he found two very helpful reports/papers which she took to her GP. She agreed to refer Lynda to a consultant dermatologist who in turn agreed that her condition was severe and recommended a course of narrow band UVB phototherapy.
Lynda started to attend a dermatology unit for two treatments per week. The aim is to produce a mild reddening of the skin without burning. Once some reddening started to happen, her symptoms began to lessen after about 12 treatments. Before phototherapy, on a scale of one to ten, Lynda said she would rate that the pain she experienced as a nine or ten and after 20 treatments it reduced to about one.
She also found that when she stopped having the phototherapy, within two weeks the pruritus returns to full strength. However, if she continues with the therapy, the amount of discomfort can be kept to a manageable level and she can get on with normal life. Bathing or showering are still difficult, but she reports being much more comfortable than without the treatment and even though phototherapy has not been a cure, it has improved her quality of life substantially.
Phototherapy may alleviate Aquagenic Pruritus
Do you have tips to share? Please email your solutions to info@mpnvoice.org.uk.
