I have been suffering from a chronic itch all over my back and scalp for 16 months and despite appointments with a dermatology professor he has been unable to reach a diagnosis and seems to think it may be an itch linked to my waldenstrom - has anyone else suffered from an itch or heard of anyone suffering. II would appreciate any thoughts.
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Hello there @Chrisc, welcome to the forum after what sounds like a long, quite literally irritating time. I’m really sorry to read you’ve been experiencing that itching.
I wonder what your Waldenström macroglobulinaemia ('WM') specialist says about the itching being linked to that? While I’m not a doctor, I’ve read many forum members mention itching as it’s sadly very common with Myeloproliferative neoplasms ('MPN') like the Polycythaemia vera ('PV') I was diagnosed with.
However, looking at the Blood Cancer UK information about Waldenström macroglobulinaemia ('WM') it doesn’t mention itching being a typical side effect: Waldenström macroglobulinaemia (WM) symptoms and diagnosis | Blood Cancer UK
Here’s the great information from Blood Cancer UK about itching for those of us living with blood cancer, including ways to help minimise it, including; “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”: Itching | Blood Cancer UK
Hope you don’t mind but I had a look around the forum for others who have shared about dealing with itchy skin. This great long thread has many forum members and Blood Cancer UK nurses sharing tips for what works to lessen itchy skin (with Polycythaemia vera ('PV'), but still relevant for you I’d say): Burning itching PV
Would it help to speak with the Blood Cancer UK nurses directly? They can advise on any medical queries you have. Their free number is 0808 2080 888.
Do have a look around the forum further @Chrisc as you will soon see you’re not alone in experiencing itching and there is a lot of understanding kindness. Please keep us posted about how you get on and what you find helps that itching.
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Hello @Chrisc
Thank you for taking time to send your post into the forum
I am a Chronic lymphocytic leukaemia ('CLL') patient - and I have not had any itching, beyond the odd insect bite or perhaps a ‘friend’ my cat brings to see me that they’ve scratched off of their self!
I’m not sure that itching is a side effect of my condition, or indeed any blood cancer, and I am not qualified to give any medical information or advice but I read that night sweats are a side effect and I wonder if this is a contributing factor (perhaps being too warm, coupled with the warm weather we’ve had this year?). Perhaps your medical experts could answer that question.
That having been said - I can see @Duncan has left a really helpful response to your question and I echo his words
It is clear that various conditions effect everyone differently - each persons experience is their own.
Please do feel free to let us know how you get on
Kind regards
Mike
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