ET itch

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I suffer from Essential Thrombocythemia for which I take Hydroxycarbamide. I generally feel O.K. except that I have a skin itch which detracts from my quality of life. Although it does occur during the day, it is at its worst at night (when I've no other distractions) and is often triggered by a reduction in temperature (when I get up to go to the toilet etc.). I've tried a variety of antihistamines which have no effect. A few years ago, before I was diagnosed with ET, I attended the Dermatology Dept of my local hospital and had a course of UV which helped a little. After the course, the itch came back almost immediately and my GP referred me again but that was more than three years ago and I'm told that I still have, at least, another six months to wait. I now am fairly sure that the itch is a result of the ET (which hadn't been diagnosed before) and find myself wondering if there is any point attending Dermatology when I eventually get an appointment. From my research on the Web I've learned that skin itch affects about 40% of ET sufferers but have found no answer to the itch. Is it just something I have to live with or should I wait to see if the dermatologists can provide some relief (and a good night's sleep!)?

  • Hello Templar1,

    Thanks for getting in touch and welcome to our Online Community.

    I’m Elise, one of the cancer information nurses on the Macmillan Support Line

    We’re sorry to read that this ongoing itch is having such an impact on your quality of life including your sleep.

    You’re right to highlight that itchy skin or pruritis can be a side effect of Essential Thrombocytopenia (ET) either as a result of the condition itself or it’s treatment.

    It’s possible that a dermatology appointment would be helpful for you for several reasons.

    1.to establish that there are no other medical issues causing the itchiness.

    1. to discuss possible treatment options for ET related pruritis

    This case study published in MPN Voices is one example where dermatology input alongside a haematologist proved beneficial.

    We’re wondering if your haematology team are liaising with dermatology about the impact that pruritis is having on you and if they think a quicker appointment would be beneficial for you?

    If you are scheduled for a haematology appointment soon, we’d suggest asking about that.

    Living with this level of itch can be very difficult and that’s why we’re suggesting that a bit of a joined-up approach between haematology and dermatology may be helpful.

    Our online community MPN and MDS forum is a supportive network and I’m wondering if anyone there can share a similar experience with you if you post a question?

    Best wishes,

    Elise

    Cancer Information Nurse Specialist

    You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email

     

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