Hairy Cell Leukaemia - Itchy skin rash

Good evening. I was diagnosed with Hairy Cell Leukaemia in December of last year and apart from fatigue and recurrent cold sores, have been largely asymptomatic. However, in the last 2 weeks, I have developed a widespread rash over my trunk, arms, thighs and neck. It started as small “pimples” which part from being able to feel them, were not troublesome. In the last week, they have become massively itchy to the point where I have rubbed the skin raw.
I have tried antihistamines (piriton), hydrocortisone cream and emollients - treating it like a flare up of eczema essentially.
Is this a common experience with Hairy cell leukaemia (HCL)/ leukaemia in general? Does it correlate with disease activity? What works to make the itching tolerable and to give a decent nights’ sleep?


Hi @Gasman a great big welcome to our forum.
I find it so difficult to know if a symptom is attributed to my blood cancer, another condition I have or something completely different.
Perhaps it might be worth contacting your GP, specialist nurse or consultant to check your symptoms out, they sound nasty.
Please do let us know how you get on.
Someone might be able to share their experiences.
The Blood Cancer UK support line is there for you on 0808 2080 888.
Be kind to yourself and take lots of care

1 Like

Update: I spoke to my haematologist this morning. The itching is related to the Hairy cell leukaemia (HCL) and is probably Leukaemia Cutis.

My current treatment with antihistamines/ topical steroid and emollient is optimal. It was suggested that I could speak to my GP about adding a drug like amitriptyline or gabapentin.

In the meantime, I will be starting chemo next week.

1 Like

I hope that has helped you a bit @Gasman, it helps me to know the cause and the way forward, although I realise that has not controlled your problem yet.
Please do keep posting what is going on for you and really look after yourself