PRV stabilisation question

[cwayman11]

Hi.. I'm interested to hear from PRV patients who are now more stabilised using venesections to understand if you still suffer from the same fatigue still or if this eases at all over time as you are stabilised for longer per se? Thanks in advance!

[Aime]

Hi, I found the fatigue used to go about 3 days after the venesection but this last time it has kept going unfortunately. Whether it has to do with my knee op and number of ops I've had over last few years I'm not sure but fatigue has not left me this time. Hope this helps. Kind regards Aime xx😺😺

[cwayman11 in reply to Aime]

Thanks Aime. Hope you are on the mend with your knee. I seem to always be tired to some degree and no rhyme or reason. Definitely exaggerated after a benediction for 3-4 days. I find it super frustrating. I've also got dodgy knees..3 surgeries and counting so understand. Take care xx

[BlushNoisette]

Hi, I have had PV for 12 years. My experience is as follows: In the first couple of years after diagnosis, I had very few symptoms other than high cell levels which were treated with venesections and I still felt well and could get-on with my life. But then the pruritus and fatigue gradually came on; I also had rosacea on my face, bouts of cellulitis in my ankles and a lot of joint pain especially in my hands, elbows and back. During a period of treatment with hydroxyurea for 2 months in 2013, the fatigue was very much worse to the point that I could hardly get anything done, everything seemed to take so much effort, and I had to haul myself upstairs and was thinking that I needed a stairlift ....... good thing that I was retired by then. I was taken off the HU because I was feeling so bad on it and it wasn't reducing cell production. Under advice and with help from my Haematologist I applied to participate in the Majic Study. I was accepted but then only had a 50-50 chance of being given Ruxolitinib. Anyway, I was extremely lucky and have been on this med for 1.5 years. It has transformed my life. Cell production is undercontrol, my spleen has reduced to normal and I feel great.

I never found that venesections reduced my fatigue nor did they help the pruritus which was so bad that I did not bath or shower for 5 years! People's symptoms vary quite a lot both in terms of what you experience and to what degree, so my experience may or may not be typical for people with PV. ....... I don't know. I also found that my GPs didn't understand PV and left everything to my haematologist. My first consultant was quite reluctant to discuss the condition and the symptoms and I had to find out by going on-line. Thank goodness for mpnvoice and the forums. All I can say is, keep plugging away to get the info and help that you need and if necessary get a 2nd opinion. I do hope this info helps as I know how difficult this condition is and how poor your quality of life can be. All the best, Lyn

[Anita53]

I'm also on the Majic trial. When I first went on the trial I had ET then it changed to PV nearly 3 years ago. I was put on hydroxycarbomide and venesections. I'm on the best alternative therapy arm of the Majic trial. My blood counts came down very well and have remained good since I went on hydroxy. My only problems are itching, tiredness and worst of all breathlessness. I've had all the usual heart and lung tests and nothing showed up (relieved in a way). So have come to the conclusion that my breathlessness is caused by the hydroxy or PV. Perhaps when the trial finishes in a year I might be offered Ruxolitinib!! All the best everyone.

[mark382]

I usually feel less fatigued after a venesection but it never completely goes. Some days are worse than others. I can never predict when I will feel worse other than when a "drain down" (that's what we jokingly a venesection) is due. Had PV for 8 years and on aspirin.