I was diagnosed with both Polycythaemia vera (PV) and Essential thrombocythemia (ET) in Oct 2021 and take chemo tablets every other day.
Over the past 12 months or so I have started to get a stiff and painful hip ( like arthritis), then that clears up and I get the same issue with a knee, then that clears up but I get what feels like swollen glands in my armpit for a few days then on to another joint that gets stuff or hurts. And in and on… Just niggles through to pain somewhere in my body.
Is this to do with the Polycythaemia vera (PV) and Essential thrombocythemia (ET), is it just ageing or what? I’m 65 and relatively active walking the dog everywhere day, swimming twice a week, etc…
Thanks for any advice or similar experiences.
Oh @Helenw aren’t we complex, individual beings and therefore perhaps I would find a diary of events would help with the symptoms you have and are experiencing and asking your medical team, perhaps your specialist nurse, if you have one.
Others may be able to share their experiences too.
I will copy your post to the Blood Cancer UK nurses for you as well. @BloodCancerUK_Nurses.
Please do let us know how you get on and be kind to yourself, I bet your dog keeps you active though.
Sorry to hear you have been experiencing intermittent pain. Whilst Essential thrombocythemia (ET) does not normally cause these symptoms, a symptom of Polycythaemia vera (PV) is gout, which can cause pain in your joints. PV Symptoms. It is always best to discuss your symptoms with your haematology team as they are best placed to advise you. Sometimes your chemotherapy can cause side effects too. Do you mind me asking what treatment you are on?
It is good to hear that you swim regularly and walk your dog. It’s important to stay as active as you can and look after ourselves.
I know Essential thrombocythemia (ET) can cause gout but just assumed this would appear in my big toe rather than other joints; thank you for the tip.
My GP diagnosed arthritis in my hip as I had had the problem for months ( and the symptoms fit) but I was perplexed by the pain moving around different joints or soft tissue and also by the occasional feeling of flu like symptoms.
I will definitely speak to the consultant at my next consultation in January and take it from there.