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polycythaemia vera

(12 Posts)
newNannie2023 Sun 08-Jun-25 10:36:50

Back in January this year my GP told me i had polycythaemia vera after a blood test and referred me to the hospital for treatment. He said I would probably have to be bled and in the meantime gave me a low dose of aspirin to take daily. I am still waiting for an appointment. The only apparent symptom i am noticing is my skin is very red/purple blotchy. Has anyone else had this please and should I be worried? Thank you x

NotSpaghetti Sun 08-Jun-25 10:42:56

Presumably the asprin is to prevent your blood becoming "sticky" and causing secondary issues (eg stroke).

Have you called anything to see where you are on the lists?

I would be wanting to know more about management!

Of course asprin may be enough!

NotSpaghetti Sun 08-Jun-25 10:47:43

(I think it's called "Active Monitoring" if they are just watching and waiting but I think I'd want to know they were watching.

I did think that oncology had a 2 weeks wait... but maybe having given you asprin you are already on a treatment plan?

newNannie2023 Sun 08-Jun-25 11:32:11

i will do this tomorrow. thank youx

Katek Sun 08-Jun-25 11:46:24

My father suffered from polycythemia and had various treatments to slow red cell production/viscosity. Aspirin, antiplatelet drugs, certain chemotherapy drugs and also phosphorus 32 injections
(It may have been an implant, can't quite remember). It's not a rapidly developing illness so medics have time to work out best plan for you. Good luck with your treatment.

NotSpaghetti Sun 08-Jun-25 12:39:44

Yes. I think decades rather than weeks to develop- so not as long a delay as it must feel.
A shock nevertheless.
Thinking of you
flowers

sodapop Sun 08-Jun-25 15:16:28

My husband is currently being treated for this. He has progressed from 2 weekly withdrawals and weekly tests to 6 weekly tests. He is on chemo but thankfully no side effects.
He was warned to keep out of the sun and restrict red meat and spices in his diet.
Good luck newNannie

BlueBelle Sun 08-Jun-25 15:19:46

I ve never heard of this
If you do ring the department to ask about an appointment tell them you will happily take a cancellation if there is a long wait

Lupatria Mon 09-Jun-25 15:21:43

a friend of mine has had this for years and now has monthly blood tests. now and again when the red blood cell level is high he has to have a venesection. he lives a normal life and although now retired he leads a very active life as he is a keen diy-er. so please don't worry.

newNannie2023 Mon 09-Jun-25 15:53:12

Lupatria that is very reassuring to know. Thank you x

Doodle Mon 09-Jun-25 20:34:12

DH had this. He was under the care of haematologist and had regular blood test and chemotherapy drugs. As far as I know it had no real bad side effects and was well treated. I’d ask your Gp for a referral to haematology who are the experts.

lanaderay Tue 10-Jun-25 08:20:43

As far as I know it had no real bad side effects and was well treated. I’d ask your Gp for a referral to haematology who are the experts <a href="https://escaperoadgame.io">escape road game</a> free.