Hi, I was diagnosed with Polycythaemia Vera near 20 years ago. I am familiar with the itchy/prickly sensation after a shower, but recently I’ve been getting a different kind of itch, something more persistent, and not just after a shower. Spots as well, but not what I’d call a rash. I’ve always had sensitive skin, pale, burn easily in the sun, mosquitos and other nasty insects love me. Is my Polycythaemia vera ('PV') now changing, is this the beginning of the end stage?
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Hello @d00d
Welcome to the forum and thank you for taking time to send in your question
I’m sorry to learn about your circumstance - my heart goes out to you.
I’m not familiar with the experiences your having - I have Chronic lymphocytic leukaemia ('CLL') (early stages). I’ve asked one of our @BloodCancerUK_Nurses to respond as your question is very specific and requires more in-depth knowledge I feel.
Take good care of yourself
Kind regards
Mike
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Thanks Mike, I had better explain further: I’m suffering from night sweats quite badly most nights and come the morning I have a couple, or more, new spots. It’s like I’m being bitten but I think it’s heat spots. Some itchier than others. My GP said scabies and prescribed insecticide cream. When that didn’t work I tried tablets. It doesn’t look like scabies and it’s not contagious, so misdiagnosis I feel. I will talk to my haematologist about it at my next appointment in May but I’d like to find out more asap. 
Cheers
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Hello there @d00d, welcome to the forum from one survivor of Polycythaemia vera ('PV') to another. If I may be so bold, I’m impressed by your longevity and hope for similar. What has helped you live with Polycythaemia vera ('PV') do you think?
I’m sorry to read of that itchy sensation, I know that folks with Myeloproliferative neoplasms ('MPN') often have pruritus and sensitive skin but, like you say, yours sounds different. While I am not a doctor, I wonder if you might have petechiae—mine are like tiny moles that are red. My doctor checks mine regularly and says they’re just a sign of my blood being thinner and able to reach closer to the surface of my skin in the capillaries. They can also be caused by physical strain, like coughing, as my other half has a few too, but without the Polycythaemia vera ('PV')! I would say let your specialist know so you can show them, just to be sure.
As for an end stage, I would not like to say but I haven’t personally heard of any links between petechiae and anything more serious from my specialists. Please check this with your haematologist as you don’t need to live with a concern like that. I tend to think of my main risk as blood clots, so I watch out for those. Here is the great Blood Cancer UK information about common Polycythaemia vera ('PV') symptoms: Polycythaemia vera (PV) symptoms | Blood Cancer UK
Would you like to speak to the lovely Blood Cancer UK specialist nurses? I see @GenesisDevice has kindly tagged them already. They really know their stuff and can give medical advice, unlike we forum members. They’re next back on Monday and their number is 0808 2080 888.
Hope that helps a little @d00d, do consider giving the nurses a call to gain some reassurance from an expert.
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Thanks Duncan
Everything in moderation: good food, good wine, a good woman to keep you on the straight and narrow.
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Ha well 1/3 of those will have to do for me! Glad you’re doing so well @d00d.
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Hi @d00d, what a reassuring thing to see - nearly 20 years living well with Polycythaemia vera ('PV'). You’re very welcome here.
I’m glad our wonderful @Duncan and @GenesisDevice have already picked this up. I did want to add - if these symptoms are worrying you and May feels like a long way off, you don’t have to wait. It’s entirely reasonable to contact your haematology team sooner to flag what you’ve noticed - or you can call our Support Line on 0808 2080 888 (option 1) and speak to one of our clincal nurses there, who can talk it through with you in the meantime.
On the stage question, I can’t give you a clinical answer on it but our PV prognosis page is honest and may be useful, and your haematologist is the right person to explore what any changes might mean for you specifically.
We also have a dedicated page on itching with blood cancer that goes into more detail than the general symptoms page, as it covers why itching with MPNs can present in different ways, which might be helpful given that yours has changed. And if you scroll to the bottom of this page, you’ll see a ‘Related’ section where the forum pulls up conversations on similar topics automatically, and there’s a PV itchiness thread with replies from people who’ve tried various things that’s well worth a browse. It’s a handy feature for finding conversations you might not otherwise come across.
Do keep us posted, and please do reach out sooner rather than later if you’re concerned.
Take care,
Ceri - Blood Cancer UK Support Services
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Thank you Ceri. In May I’ll have a blood test, and see what the results tell the haematologists. If, in the meantime, I feel worse, I think I’ll see my GP.
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Hi, so here is a brief update.
I’ve got Scabies, it’s the most horrible thing, I’ve tried to get rid of it with creams and tablets, but with no luck. They seem to be killing some, but not all, of the mites.
I’ve got Polycythaemia vera ('PV'), a lowered immunity, what can be done!
Can haematology help? I’m not the first person to be in this situation, tell me they have tricks up their sleaves. Google Ai says, “people with lowered or weakened immunity find it significantly harder to fight off scabies”. What does the nhs do with such people?
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Hello again @d00d, I’m really sorry to read this. At least you know the cause of that dratted itching now and can start treating it. Can’t say I’ve heard of others around the forum developing scabies, but like you say we’d be more prone to it due to weakened immunities.
I’m of a mind that our haematologists need to know anything health-related about us so they can adjust our treatments if necessary. I’d tell my own if I developed a skin condition, for example. It could be that your specialist knows of the best treatment for scabies that won’t contraindicate your Polycythaemia vera ('PV') treatments and vice versa.
Hope you get some relief soon @d00d and well done for seeking an explanation for that itching beyond Polycythaemia vera ('PV').
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Duncan 
, maybe it’s unfair of me to mention scabies, but I’m convinced I have it because of my lowered immunity, and can’t rid myself of it. The drugs don’t work. I tried 6 or 7 times since last December. I’m buggered.
The nameless anonymous GPs are pretty useless, just want to keep their distance. Scabies is not talked about, not least, by the doctors. A nasty parasite that eats away at you.
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That’s horrible and doesn’t sound like good enough care from your GPs @d00d, I’m sorry to say. I’m also sorry you had to turn to AI to get some answers. Using a simple essential oil like tea tree can help some skin complaints and can be bought at chemists and health food shops, although these aren’t approved medically.
I’d really suggest calling the Blood Cancer UK nurses as they can advise about ways you can treat the scabies, their number is 0808 2080 888. You don’t need to live in discomfort.
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