hi all
I have PV and the team has been checking my hematocrit regularly for venesection. I have not needed a venesection for 18 months as it has been below 0.45. However, I noticed that my WBC has been creeping up. It is now 14.3. My specialist has advised 15 to be the alert level for treatment. Anyone with similiar experience pls? Thanks!
Leukocytosis can be a component of PV. There is evidence that leukocytosis increases risk of thrombosis. I have experienced mild basophilia as part of how my PV presents, but never enough to be a concern. When I started on the interferons, basophils returned to normal levels. Note that while on 175mcg Besremi, I am experiencing mild lymphopenia dn borderline neutropenia. This is a dose-limiting factor in my treatment.
Wishing you all the best.
Thank you Hunter, as always you are so generous with your knowledge and experience.
Hi, yes I have PV and my wcc has always been stubbornly high. Infact it was high back in 2012 even before I was diagnosed in 2017. To be honest, I would trade you your 14. Mine has been as high as 42! Nothing seems to shift it. I was on hydroxy for about 5 years and it controlled by platelets and hb but my wcc kept creeping up. I am now on Rux and was so excited when it dropped right down to 13 whilst I was taking Hydroxy and Rux during the cross over, but my liver was really suffering with the two medications. Now on Rux only and already increased dose twice and still wcc is rising with platelets and reds under control. Such a shame because Rux makes me feel so much better in myself but I am thinking I'm not going to tolerate it much longer. I am reluctant to try interferon because of my anxiety and I have some odd immune things sometimes - with some inflammatory markers raising some alarms but not enough for anyone to look into further. So a bit stuck .....
Thank you MW for sharing your experience. I am sorry that it has been tricky for you. All the best for your journey.
What dose of Rux are you on and why don’t you think your not going to tolerate much longer
I'm on 15mg x 2 per day. However, if I increase my dose my red cells and platelets are likely to go down too much.
How long are you on that dose, when I started on Rux my cells came down at different rates but eventually all ended up normal
I've been on it since February this year. No one seems sure why my WCC seems unaffected by anything I take but I have been told that it is the case with some people. My WCC seems to be going up faster with Rux than it did with Hydroxy, whilst Rux seems to work better on the reds and platelets. I feel really well on Rux, so it will be a shame if I have to change or try a combo. I'm glad yours came down into the normal range - it is where I am aiming for!
Yes, mine started doing that after my Covid booster 2 years ago. It was one of the big reasons they put me on Besremi. And to be honest I am so glad they did. I am no longer terrified every time I have my labs wondering if they are going to be bad. Now I have been well controlled for over a year.
I was diagnosed with PV in 2015, treated first with phlebotomy, then HU, and for the past two years with Rux. WBC was quite high (21-27) in the 18 months before I started on Rux; now it has come down to the 15-20 range and seems now to be stable there. My doctors (local hematologost and MPN specialist) don't seem concerned.
This is super helpful! Thanks.
this is a bit of a grey area, although high whites can be increase in thrombotic risk the question is does lowering them reduce the thrombotic risk, there was a study done on that by Dr Mascerenas and unfortunately I can’t remember the outcome.
Remember upper end of normal is 11 so 14 isn’t bad , mine were 23 on venisection only and I know of others with whites 35-60 and to date no thrombotic issues. I think Clair Harrison did a talk saying best to keep them under 15.
We are all reluctant to start meds but if you find a med that suits you they can make some people feel better, be safer, and for some maybe modify the marrow
When my whites reached 48 a bone marrow biopsy showed that my PV had progressed to MF. My ruxolitinib was increased to 15mg twice a day. Whites now mid 20s but everything else is rather low. Surprisingly I feel better than I have in a long time.
Carol
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