Ok has anyone got any tips on anything that might help with the adult puberty growth spurt pains that come with Polycythaemia vera (PV)?
Since the rapid leech blood donations, the pain in the bones and muscles are coming back, at least I now know what is causing them.
Any thing work for you?
Malt whisky is not good for my bank balance 
Hi @clickinhistory sorry I cannot help with your symptoms.
What do your medical team say?
Be very kind to yourself
@Erica what medical team? In football terms, I am a very small lower league team waiting for some random Hollywood actor looking to off load tax liabilities to improve my lot
Seeing the specialist haematologist tomorrow and no doubt the cancer nurses will be in hiding somewhere or just ignoring you sat there in the waiting room.
Did look on this sites info, but nothing there. Also under treatments, no mention of the blood taking and it’s side effects 
Here’s to trying to get answers tomorrow, being kind in the form of purple red coloured water imported from France
I hope you get some answers tomorrow. Make sure you ask along those questions and let us know how you get on 
@Nichola75 The doc wants me back on fortnightly leech sessions as my other blood count levels have come down to normal levels, the Red Baron cells are still doing victory rolls, but are down to .55.
The leech station nurses were like er not sure, but he is the head of the department and never talks to us, quick group huddle and decided to take a half pint out. As they were away of my last state of health from fortnightly visits
Typically, my blood flowed smoothly and behaved itself.
Not sure about this, but when the doc rang them to book me in, they responded, “yes we know who you mean, send him over” and here was me just quiet and polite when I am with them
Looking forward, yes I got to ask a question(he had a student in, so had to be polite), going forward, he is holding fire with the drugs, both for the itching if it flairs up again and the cancer, as the leeches have got the counts down except for the Red Barons.
No answers for the shortness of breath or body pain though.
Missed soup and sandwiches by five minutes as well
Well, first off all I can’t believe you missed the soup and sandwiches!!!
I’m glad it all went well today and you got to ask questions but frustrating that there was no advice on how to manage the body pain.
I hope you’re feeling ok about it all!?
@Nichola75 croissant and revive smoothie from Lidl on the walk home to get over the shock 
Strange we have all this knowledge of the symptoms of Polycythaemia vera (PV), yet nothing as yet to deal with them and the route causes, those pesky Red Baron cells, but we can land a rocket probe on a comet, get a phone signal to it and get it back to earth. 
That sounds like a rather positive response to the bloodlettings! So your haematocrit is down to 55 %? That’s so close to ‘normal’ that I’d have a little celebration, maybe a croissant…
So you’re not taking a cytoreductive medicine like hydroxyurea but are getting your blood cell numbers into their normal ranges? That would be my preferred treatment. Rather occasional bloodlettings than daily chemotherapy.
I was thinking, after I started fortnightly phlebotomy I often had backache, which I realised was likely something to do with blood production in my pelvic bone going askew due to treatment. But you have those prior injuries, could they be affecting your levels of pain I wonder? I had all sorts of historic (to me) injuries playing up after treatment began, like tendinitis in my elbow and a sprained finger really aching all over again. My non-medical personal theory is that something about treatment removing my blood made those injuries ache anew, but no medical expert has confirmed this.
Just started the merry dance of awaiting today’s CBC results and keeping fingers crossed that my haematocrit is still below the magic number 
Hi @Duncan please do let us know when you stop your merry dance and get your CBC results.
Be kind to yourself whilst you are waiting
Aw thank you so much, Erica. Not feeling anxious today, probably because I had a CBC done only a week ago and those results were great! So far no need for phlebotomy this year as the medicine has been doing its job and I’m hoping it’ll be the same today
Whoops spoke too soon—my haematocrit is 45.9 % today so annoyingly I’ll need to go in for phlebotomy this week. It’s so hard to predict, but I suppose I have been more tired than usual recently. At least my various blood cells are within their normal ranges 
@Duncan Yes! I’m sure all the blood removal has revealed other conditions, such a Raynaud’s syndrome.
Had to google Raynaud’s syndrome, it sounds horrible! Don’t think I’ve got that though as there’s been no cycling between pale, blue and then reddened fingers or other extremities 
The aches I’ve felt in my elbow and finger are definitely ones I had from the before times, pre-diagnosis, seemingly back prior to taking hydroxyurea. Hopefully you don’t have to live with Raynaud’s, @PollyVera?
@Duncan - although I’ve never asked for a diagnosis, I do get the symptoms. My forefingers in particular, go ghostly white when very cold and then scarlet as they thaw out. Like you, it’s possible I had it before my diagnosis but all that extra blood kept me warm 
Oh goodness, I’m sorry you experience that! May I ask if it’s painful or uncomfortable? Does anything seem to help?
Perhaps @PollyVera if you were to get it checked out medically it would settle your mind once and for all.
Personally I would need to write down all my symptoms and their severity as my mind goes blank at the least thing.
If you do decide to please do let us know how you get on.
Take lots of care.
@Duncan Doc is holding fire on the chemical route, relying on the method used by dishonest publicans the world over, diluting the beer.
Been trying to alter my diet, walk more and yuk, drink more water or heavy water fruits. To be honest after all the pain etc from the last few months, I was surprised the numbers were down. The haemoglobin levels still high in the 180/190 range.
The pain is on top of the memory of pain sites, but like you Polycythaemia vera (PV) knows the memory of past hurts and likes to point out how badly you treated your body in the past.
I know after the leeches, the injury area around my sternum becomes sore and tingly, another blood creation point, who knew?
@Duncan or it is trying to get you to pick the route with the most pitstops
Hope the leeches visit goes well
@PollyVera that is a common symptom of Polycythaemia vera (PV), looking back the sudden change in the way my hands reacted to cold and heat, was a sign the Polycythaemia vera (PV) was in the system.
I have friends who suffer from Raynaud’s so I sort of understand the difference so I would not self diagnose it from Doctor G and see a medical team about it.