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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Hi @d00d, I wanted to check in on how you’re doing now - were you able to speak to your haematology team?
I hope the itching has subsided.
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Hi @Ceri_BloodCancerUK I’m a bit flustered, had some scabies treatment yesterday. Been in touch with haematology, they want me to have a blood test next week, go home and they will phone with the results.
I’ll keep in touch, wish you all well.
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I have Polycythaemia vera ('PV') and lve developed hard tiny itchy spots in random places just one here and there, hand and chest mainly. Also l feel like lm being pricked with a pin in random places and it continues all night so l can’t sleep. I’m on hydroxycarbamide and Venesections, was diagnosed in January and lve had this itchy pricking years before diagnosis. And looking at a lifetime of meds is depressing and lm not coping.
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Hi, I’m not qualified to give advice but AFAIK, if you have Polycythaemia vera ('PV') you have a weakened immune system. This means you are open to catching a range of other ailments. Scabies? Well, it should not be ruled out for sure.
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Hello there @Brij, welcome to the forum at what sounds like a truly irritating time. I’m so sorry to read of your Polycythaemia vera ('PV') diagnosis and that itching.
Like @d00d kindly shared, you’re not alone in having itchy skin with a diagnosis of Polycythaemia vera ('PV'), although we forum members can’t offer medical advice. I’ll share the Blood Cancer UK information about Polycythaemia vera ('PV') here: Polycythaemia vera (PV) | Blood Cancer UK
In 2023 I was diagnosed with Polycythaemia vera ('PV') and empathise with how a lifetime ahead of medicine can feel depressing. I also take hydroxyurea, plus aspirin and phlebotomy when needed. While I hate having to take daily chemotherapy, it also really impresses me that there is such a simple treatment. Aren’t we lucky that there is medicine available for Polycythaemia vera ('PV')?!
Itchy skin is sadly very common with Polycythaemia vera ('PV') and other Myeloproliferative neoplasms ('MPN'), and what helps some might not help you and vice versa, but it might be worth having a look at the BCUK research: Itching | Blood Cancer UK
I’d really suggest you mention the itching to your specialists if you haven’t already. In fact, tell them again until it’s acknowledged as affecting your quality of life. It might be that anaemia could be affecting how your skin feels, or indeed it could be a separate condition, but it really needs to be checked by a specialist I’d say.
Another option is to call the lovely Blood Cancer UK specialist nurses who can advise on ways to minimise that itching if nothing helped from that link above. Their free number is 0808 2080 888.
Hope that helps a little @Brij, maybe have a further look around the forum using the search box at the top for others dealing with itching and what ways help them. Keep us posted about how you get on.
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Hello @Brij
Thank you for your post and welcome to our forum.
We are so sorry to hear about your diagnosis of Polycythaemia vera ('PV') and that you are experiencing issues with itchy spots. We can imagine this is a difficult time for you and itching can cause a lot of frustration.
I can see that others have responded with really helpful information, but I just wanted to reiterate informing your team or GP as soon as you can so that they can support you as best they can, especially as this is persisting and affecting your sleep and how you are feeling. They may be able to prescribe creams, antihistamine medications or review your hydroxycarbamide.
I can see @Duncan has kindly linked to our Itching | Blood Cancer UK page which we hope is useful. We also have a page on Sleep problems | Blood Cancer UK in case this is helpful.
In addition to these pages, we also have a section on Blood cancer: mind and emotions | Blood Cancer UK which includes suggestions for ways to look after yourself and your mental health when you have blood cancer, including where to get more emotional support.
If you’d like to talk through anything, please do give us a call on 0808 2080 888.
Keep us updated & take care,
Emma (support services nurse)
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Thank you all for your replies, l appreciate it. 
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Brij,
I said
if you have Polycythaemia vera (‘Polycythaemia vera ('PV')’) you have a weakened immune system. This means you are open to catching a range of other ailments.
Now I’m not sure that’s the case, necessarily. You need to talk to the consultants about your immunity. It may be fine.
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