Hello fellow mpn'ers. I haven't written for a while, i do check out the posts. Maybe the lonliness I feel with this spreads out and keeps me to myself.
I was diagnosed with pv 3 years ago,it took a while, so like most of you, who knows how long I had it. I started with venesections, quite regularly. I am with my local hospital and also Guys, just as well as my local hospital has no consultant haematologists at the moment. At the begining of last year I was put on hydroxy, 1 a day, that went up to 2 on 3 days plus the occasional venesection. Then this year my haemocrit and other bloods were all fabby dabby around 41, I'd thought this was the accupuncture I was having. Then woops a few months ago it went up to 48 so a venesection plus 2 hydroxy for 4 days, a couple of weeks later haemocrit 47.5, yicks another venesection tomorrow and after having been in touch with guys up the hydroxy to 1 on 2 days and 2 on 5 days.
I am pretty miserable about it at the moment, sadly there are other stress issues I am dealing with. My ferratin is low and will get lower as does folate. This affects nails, energy etc.
Any ideas anyone about anything that can be done to lower haemacrit and up ferratin without making things worse.
Thank you everyone for being here and providing a place for sharing.
If only Mal 42, my H C T climbed very high,Hydrea increased ,then wham,every white cell went ballistic,and of course I ended up hospitalised.
In a nutshell,Hydrea has given up on me and my French Drs have changed me to Jakafi....too early to say how it's working,just out of hospital,bloods will be checked every 15 days,I intend to post my recent journey thru when I feel better....good luck to you....things have moved on since my diagnosis 9 yrs ago,so keep strong .Sally
Thanks Sally, good luck with jakafi. It has been suggested I try rutoxilib. See what happens on Guys visit in Feb.
Lucky you to be able to have treatment at Guys.
Rux is Jakafi ,it is apparently very expensive,I just hope it works!!
Hi Inca..I was put on jakafi approx 3 weeks ago.. my numbers dropped to 41 and have stayed. Give it time and it will help. My energy is slowly coming back as the Hydrea starts to leave system. Fingers crossed that this change happens soon for you...Sheryl 👍🏻👍🏻
Hi Sheryl,Thanks for your input of Jakafi.
I am just two weeks so far,nurse coming in to test bloods on Monday,think I actually feel a bit better(apart from headache) so here's hoping,glad it helps you,hope for me then! Best to you ,Sally