Hi all
I’m new here I’ve had a recency diagnosis of Polycythaemia vera ('PV') in January, had repeat bloods done in February and ultra sound of kidneys and spleen, x ray of chest. Had a JAKS 2 blood done , and have nothing since. Is this normal. I have buzzing in my ears, severe knee pain and very painful and heavy legs, does anyone else have these symptoms.
Thanks
Hi @adelesl and welcome to the forum
I’m sorry to hear about your diagnosis and I’m glad that you have come on to the forum for support.
My diagnosis is a different Myeloproliferative neoplasms ('MPN') called Myelofibrosis rather than Polycythaemia vera ('PV').
There are a number of people on the forum living with Polycythaemia vera ('PV') including @Duncan who is always a great support to others.
You may also want to reach out to the @BloodCancerUK-SupportTeam
If you have noticed things changing it’s always worth flagging to your clinical team.
Hope that helps and take care
@adelesl Welcome fellow Polycythaemia vera ('PV') person! I was diagnosed about three years ago if I remember correctly. A bit of a shock at the time but the consultant gave me a copy of the Blood Cancer UK booklet and that really helped.
Have you not had an appointment since February other than for tests?
As to symptoms, yes, I have a buzzing in my ears (though in my case it probably relates to my time in a band) and dodgy knees (which I’ve always assumed was age related). I’ve only had heavy legs when I get dehydrated and/or spend many hours sitting while travelling across Europe on trains. I’m now much better about getting up and walking about and doing leg exercises while sitting for long periods. Thinking about it, I do get more ear noises when I’m dehydrated. I expect the medics have a term for it.
Since being diagnosed I’m much more careful about staying hydrated.
Hello there @adelesl, welcome to the forum. I’m so sorry to read of that Polycythaemia vera ('PV') diagnosis and especially the pain you’re feeling. So glad you found the forum. Thanks @DuncanB, lovely to have your support as ever!
I was also diagnosed with Polycythaemia vera ('PV') so can appreciate how worrying it must have been for you since your own diagnosis. Isn’t it a lot to take in?! I’ll share the great Blood Cancer UK information about Polycythaemia vera ('PV') for you here: Polycythaemia vera (PV) | Blood Cancer UK
Unfortunately, my haematologist told me that aching joints can be a side effect of Polycythaemia vera ('PV') and other Myeloproliferative neoplasms ('MPN'). In some cases it can be gout. After my diagnosis I had weird old aches and pains come back, like tendinitis in my elbow and a sprained ankle, maybe it was gout? It did pass though, no more aching 3 years on. Here’s more information about typical Polycythaemia vera ('PV') symptoms: Polycythaemia vera (PV) symptoms | Blood Cancer UK
Sounds like @Lucky had similar audible buzzing symptoms, I imagine that’s very annoying, and perhaps like tinnitus? I’d say any symptom that gets in the way of living normally needs mentioning to our specialists, so do pass that and the aching by your doctors or CNS, @adelesl.
Have you heard of Myeloproliferative neoplasms ('MPN') 10 symptoms trackers? They’re an app or note where you can write about which of the main 10 symptoms we tend to get with Myeloproliferative neoplasms ('MPN') like Polycythaemia vera ('PV'). Here’s a couple that have been recommended; https://uk.mpn.your-symptom-questionnaire.com/ and MPN | Sanius Health
If you’d like to speak with the lovely expert Blood Cancer UK nurses about those symptoms and anything else their free number is 0808 2080 888, back tomorrow (Monday).
Hope that helps a little @adelesl, do keep note of any and all new or changed symptoms. I’d say your specialists need to know about the pain you’re in as they can recommend ways to help—you don’t need to be in any pain. Please let us know how you get on.
Hello @adelesl
Thank you for your post and welcome to our online forum.
We are so sorry to hear about your recent diagnosis of Polycythaemia vera ('PV'). We can imagine this is a difficult time for you and should you wish to talk to one of our support nurses you can get in touch on 0808 2080 888 or support@bloodcancer.org.uk.
I can see that others have commented with really helpful replies and that @Duncan has copied in the links to our Polycythaemia vera ('PV') pages which we hope are useful for you to read over. We also have a booklet available for free and can be delivered to your home or to view online - Polycythaemia vera (PV) | Blood Cancer UK Shop.
We would just like to reiterate informing your team of your symptoms as soon as you can, you should have a clinical nurse specialist you can contact? or have been given the number for someone else in the team? If you are unable to get in touch with someone from the haematology team, you could call the hospital switchboard/ main line and ask to speak to the haematology medical secretary and they can put you in touch with someone. If not, then perhaps call your GP so that they are aware of your symptoms.
It sounds like a long time to wait with no further correspondence from the team. They should have given you a plan or a copy of the clinic letter outlining what to expect going forwards and a management plan.
Again, the medical secretary for haematology would have information on any upcoming appointments. You may want to check with them regarding this. Usually further appointments for blood tests or a clinic appointment would be given to discuss if any treatment is needed or monitoring for the Polycythaemia vera ('PV').
Do take care & keep us updated,
Warm wishes,
Emma (Support services nurse)