Hi I just thought I'd introduce myself. I was diagnosed with PV back in November 17 initially my haematacrit was 72.3 now some 5 months and 15 venesections later my level is at 46. I also had high white cell count of 25 and high platelets of around 720. I had a bmb in Feb and it was consistent with PV. I was 57 last week and started Hydroxcarbimide 3 weeks ago and my white cells and platelets are now coming down. My 16th venesection is due next week although I think these will reduce now I'm taking Hydroxy. I read the posts on the site everyday and find it very reassuring and informative.
Gordon
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Gordon335
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Sorry to hear of your PV diagnosis. I have ET, diagnosed 2016. It’s good that you read the posts; it’s amazing how much you can learn from this. We’re a very supportive bunch on here too, so if you have any questions, fire away!
Sounds like you’re having a good response to hydrea. I’ve been on this for two years and it suits me very well.
Hi Gordon, sorry to hear of your diagnosis but a big welcome to this MPN family. Folk will give up time to support you and finding this forum was the best thing that I have ever done for my PV.
Visit the MPN Voice website as well as you can trust the information on it. Be careful about surfing the web as some information is both incorrect and alarming. This forum is strictly monitored also by Maz and her team. Maz can also help you with specific questions and allocate you a buddy if you feel you need one.
Take care, keep in touch, drink plenty of fluids, eat healthily but have treats too. Kindest regards Aime x😺😺
I echo what the other ladies have said so Hello Gordon and welcome.
I’m fairly new to this site and to ET (although I’ve probably had it for years!) and have found it a great source of advice and reassurance. Hope it helps and comforts you too.
Hi Gordon. My husband Angus is your age and has PV too. When he was first diagnosed we were anxious of course, but greatly helped by this forum. He’s getting along pretty well - now on aspirin and had a few venesections at the start. He tried hydroxy for a short time but the haemo took him off as he said things were settling. So it’s aspirin only and lots of fluids. Main symptoms are fatigue, joint pain, loss of concentration but mostly leading as normal a life as possible. Good luck and welcome to the forum. Maz will keep you right- she’s like a nice caring sister!
Hello and welcome. Sounds like the Hydroxy is kicking in and hopefully you can soon wave goodbye to venesections. The excitement of them taking a pint of blood and chucking it away does pall pretty quickly. 😂. Wishing you all the best.
Holy moly that is high! Thank G-d you got diagnosed! 15 venesections must have been a nightmare. Pls shout out if you have side effects from Hydrea. We're all here to share and help. Generally, it's really well tolerated so good luck!
Hi Gordon, welcome to our forum, I hope that it is helping you to read the posts etc on here, if you would like any information booklets or information about having a buddy to talk to please email me at maz.cd@mpnvoice.org.uk. Best wishes, Maz
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PV and I'm new here!
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