Is it the PV ?

[hollymae]

Hi can you help. I have PV with bloods fine but I am having days when I have a really bad headache with shivering, feeling cold and extreme fatigue. I thought I was getting flu the first time it happened. I was ok the next day. It has happened three or four times. I spoke to the haematology nurse she didn't seem to think it was the pv

[Aime]

Hi I have PV too and just gone through flu like symptoms but hematocrit was up so needed blood off. At the clinic the nurse refused to take blood off because temperature was 38.3 although I felt ok. In the end she took 300 ml only off because my fatigue, itching, temperature control was that bad. I ended up having to go to GP and have lymph glands and spleen but all ok. At the same time my husband had some kind of virus so not sure whether I had a touch of that too on top of my PV symptoms.

After two days and a weekend in bed I felt better so not sure what to blame but I think it's important to get everything necessary checked out to put your mind at rest.

Keep in touch and let us know how you get on. Kindest regards Aime x😺

[fannetastic in reply to Aime]

Hi Hollymae , although I am unclassified, I constantly have flu like symptoms and need to take to bed. Yesterday, no energy whatsoever, ice cold but felt burning if that makes sense. The crazy things we do, there was me off to bed with a hot water bottle under duvet but fan on my face. Today I had so much energy, like the old me back. My haematocrit has been rising so could be a Venesection in a couple of weeks time. Sorry to say but a haematology nurse does not always know the answers to all things regarding MPN . Best person is your Heamatologist if you have an appointment coming soon. .

Best wishes.

Anne.

[Shelly1960 in reply to fannetastic]

Thanks an I am unclassified to and have same thing didn't realise could be my mpn

[fannetastic in reply to Shelly1960]

Shelly, yes MPN unclassified I have been told that although I have all the symptoms, headache, fatigue, joint pain, redness, itchy as hell, they cant put it into any specific category but is for sure MPN. my hct is rising now so possibly venesection in a few weeks. Its a game of wait and see.   Keep well.

Anne

[Inca]

Hi Hollymae,I too have P V ,six years now,have always had the symptoms you describe.Just now my blood is absolutely right,B P is fine,have no infection of any kind,yet I am fatigued,weak,headachy,nauseous etc.My Medicin General tells me I must rest more,I do reluctantly every afternoon,sometimes feel I could sleep for a week! I take Hydrea,as well as other poisons,venesection is not an option for me.Consultant also tells me the P V and Hy make you tired....can't win! Trying to do as much as we always did is not possible now,maybe you do more than you should.I do of course and suffer for it...hope you feel better soon,take care of yourself.

[jillydabrat]

A typical case of a health professional knowing nothing of the symptoms of PV. My greatest wish is that those who choose to specialise in MPN conditions actually study everything about them! What you are experiencing is very typical so please don't be scared. The sweat will run off my hubby because I have hammered the central heating up because I am so cold. If I go out to the shops I come back so exhausted it's unbearable. Please be reassured that what you are experiencing is all part and parcel of PV.

[Loubprv Volunteer]

Hi,

In my experience too, PV nurses are fairly clueless I'm afraid unless you're lucky enough to be a patient at Christie's or Guy's or wherever there happens to be a consultant haematologist who specialises in MPN's, in which case the nurses are properly trained.

Even the haematologists can be somewhat "under knowledged " if you like, unless specialists in the subject.

I decamped to another hospital two hours away after seeing a locum haematologist who told me my haematocrit was fine at 48.5, the headache was probably a virus, and asked me if I'd stopped taking my hydroxicarbamide ! Stupid man......

I'm often cold too, and have the heating on puff pastry temperature.

However, having been to Christies yesterday and seeing numerous patients with no hair, in wheelchairs, bruised and blackened hands, on drips, and looking absolutely dreadful - I count my blessings every day that all I have is PV.

I can put up with feeling cold, feeling a bit tired and all the other symptoms that occasionally plague us. It could be so much worse!

All the very best,

Louise xx🙂