Is there anyone with MPN PV , with elevated white cells and platelets ? I want to know how are being they treated even if low risk category. ( age less than 60 yrs no other medical problems)
In my case, because all three count needs adjustment, venesections was never a choice, so straight way put on hydroxy.
Hey thereI'm 50, PV Jak2, treated with aspirin and venesections since March but haematologist wants me to start Interferon as my platelets are still high and not shifting...
J
I don't think it's absolutely clear that reducing slightly elevated platelets and white blood cells results in better outcomes for people with PV, but there's certainly a level above which it isn't healthy to have elevated platelets in the long term. I was treated with venesection and aspirin for a few years, with my platelets around the 600-700 level and white blood cells similarly above the normal range. Started on hydroxycarbamide about a year ago, and in the last few months my blood counts have all stabilised in the normal region. I had a couple of venesections earlier in the year to bring the red blood cells down, but that's because my previous haematologist allowed them to drift up too much (obsessed with pills, thought venesections were no longer needed because just upping the dose every month would eventually bring the right outcome). I'm expecting in the medium term to maybe have one or two venesections a year, my haematocrit is creeping up but very slowly now.
Hi. When I was diagnosed with PV in 2017 (aged 48) all my levels were high, particularly red cells but my gp had put me on iron for several months so the priority at that time was to lower my red cells. I had a course of venesections over a period of several months and then none since as my red cells remain in the normal range. I was put on aspirin shortly after and then finally hydroxy - mainly because my white cells were such a concern, although I think platelets were high too. Looking back on my previous blood tests it appears my white cells have been high from at least 2012. Hydroxy has sorted my platelets - a little too well initially and my red cells are stable, but unfortunately my white cells remain stubbonly high and every few months rise again. I am not sure what my risks are, my consultants seemed really very concerned about my white cells a couple of years ago but they seem to have eased off a bit despite them continuing to creep up. I think if the balance of my levels become too unstable then they will move me to interferon. This was suggested two years ago but not since and they seem reluctant to change anything during the pandemic. I am also interested to hear from anyone in a similar situation as I've been told it is quite unusual.
Hi, I am 71 with PV and elevated WBC and Platelets. I think that is very common for PV patients, at least my hematologist told me so. I think it is more rare to have a PV diagnosis with normal WBC and Platelets. Maybe someone else here knows better. I was on aspirin only until this March when my Hgb went to 53.5 and one test of 55.5 and was then put on HU 1000mg per day. My WBC and platelets dropped dramatically in the first month but the Hgb barely budged. Hgb down to 49.9 on one test since and then 51.8 on the other. I am wondering if continuing on the same dose will eventually lower the RBC or if it will only happen by increasing the dose of HU? Does anyone know? Good luck to you on this journey, I guess we are all different and respond differently to treatments. Best to you.
You are right, continuing the same dose dropped all my counts , platelets and wbc in normal range and rbc slightly lower than normal . But as I shared when I go off hydra , platelets and WBC start rising faster . So for me it is On and OFF on hydra there is no stabilization for a long period on same dose. My hematologist is not in favor to allow rise in platelets and wbc, but when I read messages here I wonder many are doing good even at platelet counts 600 to 700 . I am really worried if I am on overdose of hydra.
When the ET progressed to PV I had thrombocytosis and basophilia. All of the other WBCs were WNL. The MPN Specialist recommended phlebotomy-only despite my being 63. This was the right treatment option at the time as I was HU-Intolerant. after several years, the iron-deficiency adverse effects became so bothersome that I opted for Pegasys. So for the PEG is working well. Controlling the thrombocytosis and basophilia. This is the first time my platelets have stayed in reference range for quite some time. HCT is holding steady at 44% so far. Iron levels are coming back up. I have had no adverse effects other than an acceptable decline in WBCs.
We are each different in how we respond to the treatment options we have. Based on the research about PEGylated Interferons and my own response to the medications, I believe that for most people with PV, PEG is preferable. What is critical is to make up your own mind about which treatment option you prefer based on your treatment goals, priorities, preferences and risk tolerance.
All the best.
I was diagnosed with PV Jak2 positive in 2017. Initially had a few venesections then 2 years of hydroxycarbomide, during which time my white count reached 30. I was changed over to Ruxolitinib 20mg a day. Initially after a few months my whites dropped to 17 but now hover between 25 and 28. I haven't had a face to face appointment for 2 years now, only telephone ones. Others have said their white counts are high but no one has given figures. How high are your whites
Carol
My last two counts-
On 11 aug red- 3.61 , platelets 5.41 and white 11170On 28 aug red- 3.56, platelets 4.1 and white 9110 as you can see these are quite normal, but when I go off hydra to allow red to rise, other two rises quickly beyond limits .. so adjustment of dosage really annoys me.
Thankyou all for sharing your experiences. It gives a lot of information to think on. It seems venesections is still common for all PV patient , but I was never suggested.
I was diagnosed in 2019 , with RBC @ 6.6 , WBC @ 15 and Platelets around 6.8 and I was symptomatic with visual disturbances, facial sensation and vertigo at that time. I was put straight on hydroxy , since then it is all about adjustment of all three cells, and it worked well.
Now since few months, RBC drop or rise slowly but if dose is not altered it affects whites and platelets immediately. Right now, Hb is 12.6, Red is 3.56, white is 9110 and platelet is 4.1, so when I am put off hydra , red rises but other two rises fast so again .
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