white cells rising

[Timjonze]

hi there,

I’ve got PV and have always had white cells hovering around 10-12 but recently they went up to 15 and then today they are 19. Don’t often hear about white cells but does anyone have anything like this to compare?

[hunter5582]

Leukocytosis can be an element of PV along with thrombocytosis. Note, however, that you can experience a temporary increase in leukocytes due to an infection. It is the trend over time that matters.

It also matters which of the leukocytes is elevated. Each type of white blood cell serves a different purpose. You will be able to see this looking at your CBC for neutrophils, lymphocytes, basophils, monocytes, eosinophils.. . The number will show in both absolute numbers and in a percentage. Interpreting the elevation in overall WBCs is informed by understanding which are elevated.

I used to experience mild basophilia. It was never something that was a concern as it was just part of how my case of PV presented. This is now well controlled by the Besremi. In fact, Besremi has reduced the count of all of my leukocytes.

Since you may be experiencing an upward trend in leukocytosis, a consultation with your MPN care team would be advisable. A MPN Specialist can best advise you as to the significance of this concern.

Please do let us know how you get on.

[Timjonze in reply to hunter5582]

thanks for reply - I have booked a proper chat with specialist but have to wait a few weeks. Enjoyed your bio

[MCW22]

Hi Tim, I was diagnosed with PV Jak2 positive in 2017. The lowest my white count ever went was 17 after starting ruxolitinib. Then they began to steadily rise again. I regularly got told it goes with the condition, however I constantly worried it might be a sign of progression to myelofibrosis. Towards the end of 2023 they hit 48 and at the same time my hb dropped. A bmb was quickly arranged which sure enough showed I now have post pv mf. I'm still on the same dose of rux and also currently taking iron tablets until my next appointment at the end of this month. That's when I will find out what happens next. It's always helpful to find out others experiences, good or bad.

Carol

[Timjonze in reply to MCW22]

Thanks Carol and good luck with what happens next for you

[ainslie]

on venisection only whites tend to rise as MPN ‘s are progressive diseases, mine rose from 10 to 23 over a 7 year period on venisection only, however yours rose quite quickly so it’s a fair chance it might be some infection you might not be aware of. You could retest in say a month, it’s the trend that’s important not just one test. If whites still raised or rising maybe discuss with Haem. You are fairly recently diagnosed so it’s unlikely sudden progression, meds of course will lower them if you chose that option.

[Timjonze in reply to ainslie]

Thanks. Haven’t noticed any infection and it’s two tests that have been high out of nowhere now three months apart … but hopefully it’s not too worrying

[MWxxxx]

Hi. Mine are around 28-40. I think the highest they have gone are 42. I have had my hydroxy increased a couple of times when they went down to the mid 20's but quickly went up to the 40's again. It is a fine balancing act, there is more scope to increase my Hydroxy but that would then bring down my red cells and platelets too low. For me the WCC was always the problem - it was the first anomaly found in my blood back in 2012 . I don't have any answers I'm afraid but I am still managing ok with them being so high.

[Timjonze in reply to MWxxxx]

Thanks. Good to know you’re doing well still. Do you have PV as well?

[MWxxxx in reply to Timjonze]

Yes I do. My WCC was about 12-14 I think in 2012. I didn't get diagnosed with PV until around 2017 after being given a dose of iron tablets when my red count when sky high. To be honest my WCC has always bothered me and some Haematologists seem concerned, others not so. So I asked back in the summer to be referred to Guys hospital and get another opinion on whether I should try a different therapy. I have an appointment next week -so I am just waiting to see what they say.

[Timjonze in reply to MWxxxx]

Please keep me posted on what they say and good luck with the appointment

[marlenablue]

I was diagnosed with PV in 2010 with high platelets (600-800). In 2016, my white blood cells started rising but never above 19. My spleen has always been enlarged since the 2010 diagnosis. In 2022 after a BMB, I was diagnosed with post PV MF. I also have the SF3B1 mutation. The combination of rising wbc, enlarged spleen and the SF3B1 mutation pointed to the possibility of progression to MF and well now, here I am. Currently, my platelets are now in the normal range, wbc ranges from 14-17 and rbc is over 5. My hematocrit is high enough to earn me a phlebotomy. I share my experience with you just for your awareness. I agree with others that a point in time is not conclusive and it is the trend over time that matters. I'm glad you have a consultation coming up with an MPN specialist. We are all different and it is helpful to learn what others experience. Best of luck to you and if you can, please continue to update.

[Timjonze in reply to marlenablue]

Thanks for the update Marlena will keep everyone posted with what the doctors say

[Ben2022]

Before diagnosed with PV, my first symptom was that white blood cells continued to rise, from 10 to 19, and then my red blood cells and hemoglobin also increased. My first hematologist was not concerned about leukocytosis (She even insisted pv is benigh.) When I turned to MPN specialist, he identified leukocytosis as a risk factor (yes, a risk factor for progression to MF). I now use besremi to reduce white blood cells and hemoglobin, and it works good for me.

[Timjonze in reply to Ben2022]

thanks. Any side effects from Besremi?

[Ben2022]

Fortunately, no obvious side effects. If must be one thing, it would probably be feeling tired.

[AndyT]

I have ET rather than PV and historically my white counts have been on the low side, mainly due to being on Pegasys. My WBC has however been rising this year, in particular my lymphocytes, which are now above normal.

Recent blood tests show that I have monoclonal b-cell lymphocytosis (MBL) with cells of the type seen in chronic lymphocytic leukaemia (CLL). Nothing to worry about too much at this stage but it needs monitoring. Apparently these conditions are unrelated to MPNs, so I have two blood disorders of different kinds!

[Timjonze in reply to AndyT]

As if one isn’t annoying enough! Pleased it’s not too worrying atm and good luck with the journey