I was diagnosed with PV in 2015 and I am JAK2 positive. I've been on Jakafi for about six months, and my current dosage of 10 mg/day seems to be doing a good job of controlling my HCT, HGB, and PLT numbers. However, my WBC numbers are consistently high, running at 19-20 K/uL. I understand that the literature suggests a link between leukocytosis and thrombotic events (fortunately none so far!) , but no one has yet identified a specific WBC number of concern, analogous to HCT 45. Has anyone else had similar experiences, and how have your MPN specialists dealt with them?
Thanks in advance for your help!
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I have also heard about the link between leukocytosis and thrombosis risk, but no specific number. I have heard it suggested that patients on cytoreductive therapy who are experiencing leukocytosis should be thoroughly checked for infections, blood, gastrointestinal, etc. The quality of the leukocytes is also an issue for consideration. It is. of course, also possible to have leukocytosis as a direct function of the PV. Hopefully your MPN care team will help you sort this out.
Hope you find an answer to your question soon. Please let us know what you learn.
Yes, the quality of the leukocytes is an issue with me as well. I've noticed various abnormalities in cell distribution (neutrophils high, lymphocytes low) and nature (metamyelocytes, reactive lymphocytes) and wondered about their significance. I will definitely bring this up with my MPN specialist. My guess is that a BMB may eventually be called for.
Interpreting the leukocytes is complex and there are a lot of factors. Am wondering if you are seeing any Immature Granulocytes. Certainly worth a detailed conversation with your MPN care team.
I haven't seen any reports of immature granulocytes, but my latest manual differential shows 2% nucleated RBCs. I've not seen this before; Wikipedia says that it means that immature RBCs are being released into the circulation. One more thing to ask about...
I'm no hematologist but it sounds like a fairly high WBC count. I think you will get your best information and advice from a MPN specialist. Let us know if you get any specific answers.
My WBC is consistently 30-35. Initially the haematologists were really concerned and told me I would have to switch to interferon. I was prepping myself for the change from Hydroxy and suddenly a week later, it no longer mattered: for reasons I never got to the bottom of, despite repeatedly asking the question. I'm still on Hydroxy 4 years later with my WBC still around 30 mark. I worry about it but they don't seem to. I've been told Hydroxy protects against blood clots so I don't need to change medication. My platlets and red cells are ok. I would really like my WBC to be lower though.
That's very interesting, Soon after my diagnosis, my WBC was bouncing around between 15 and 25. Platelets were also high so my hematologist put me on 500 mg/day of HU. That lowered the platelets but also got WBC down to normal range. However, the platelet numbers eventually came back up and my HU dose went up to 1000 mg/day. This led to serious skin reactions, so the HU dose was lowered again. About two years ago WBC started to increase significantly, eventually getting up as high as 27. Since my MPN specialist put me on Jakafi, the WBC is once again below 20 and it seems to be staying there. Platelets and red cells are fine, as is HCT. I'd like to know what all of this means, and what if anything can be done about it.
Yes. Me too. I would certainly be more comfortable with a lower WBC. I'm told its my neutrophils which are the highest which the haematologists don't seem to concerned about, but its still always at the back of my mind.
My neutrophils are also high, among other abnormalities in WBC distribution and configuration. No one seems to be taking this too seriously, but I'll keep asking.
Who informed you Hydrea protects you from blood clots? The main role of Hydrea is to bring your blood counts down, in particular in the case of Et the platelets, but Aspirin or Clopidogrel is usually prescribed along side it. These are to help with the stickiness or clumping together of the platelets. Hydrea alone would not protect against blood clots. I was on 4 Hydrea a day plus a daily Aspirin when I had my second stroke, now on Clopidogrel. These medications can certainly help prevent against blood clots but their is no 💯 percent magic bullet that they give total protection.
I always thought that with platelets in or near normal range, the risk of thrombosis was reduced. I stopped taking HU because I was needing too many venesections.
Sorry, I've just reread my entry and I didn't mean to make it sound like I thought Hydroxy was some kind of magic cloak of protection. I just meant that I was told that it made sense to remain on Hydroxy because (apparently) it has some kind of additional benefit which reduces the risk of blood clots. The main reason of course is for lowering the blood counts, and it did that, almost a little too well for my red cells and platlets. It just didn;t seem to touch the WBC. I do also take aspirin everyday. I am really sorry to hear that you have had two strokes on this medication, that is very frightening. I hope your new medication has better results.
No need to apologize, I didn't want you to think you are fully protected by taking it instead of it helping minimize the risk. I wondered if your Haematologist had told you that. Wishing you well.
I also think the same as you, some Haematolagists believe their is no correlation between how high platelets are yet others believe their is. In my case after my last stroke both my Haemo and the stroke consultant said they believed it was because of how high the platelets were at the time. Myself and another forum member, (Wyebird) yesterday spoke about how sensitive our platelets were when over the 500 mark, ie, suffering symptoms.
I started with Jakafi taking 10 mg twice a day. This brought the blood count numbers down quickly but I also became moderately anemic. The dose was reduced to 100 mg/week and then to 70 (i.e. 10 mg daily). Except for WBC, blood count numbers have been acceptable and apparently stable (the latest are RBC 4.41, HGB 13.4, HCT 40.4%, PLT 459). It might be possible to try raising Jakafi just a bit, since the initial dose caused WBC to come down to around 11. Unfortunately, here in the US, experimenting with different Jakafi pill combinations has significant cost implications.
you could consider splitting pills if you have room with Hct and Hgb, at one point I was splitting a 5mg of Rux in to eighths, ie 0.64mg each, you can also cut 10’s into quarters to give 2.5mg
I've been on jakafi about 4 years. Initially it brought my white count down from 30 to 17 then crept back up and most of the time is around 27 to 30. A couple of years ago I had a bad episode of vomiting, diarrhoea and rectal bleeding accompanied by severe tummy pain. At one point I had complete loss of bowel control. After a colonoscopy it was diagnosed as ischaemic colitis, which basically is a blood clot cutting off blood supply to the colon. I did wonder if the blood clot was a result of my high white count. I've been on the same dose of jakafi since starting it 10mg in the morning and 10mg in the evening. All other numbers are acceptable. Dr's don't seem concerned about the high whites
I've also seen the WBC variability you report, but my count now seems relatively stable at about 20. No major blood clots so far, but I do have paresthesia in the toes on both feet; a MPN specialist told me that this could be caused by micro-clots in capillaries. Back in August, I started on Jakafi at your dose, but became significantly anemic after a month or two; my dose is now 10 mg in the morning.
there is a view that high WBC are an increased thrombotic risk, the question is how high WBC is a risk and how much of a risk. Then the second question is whether lowering them actually reduces that risk. Prof John Mascarenhas from Mount Sinai in NY did a analysis of this and presented it at the doc to doc conference in NY a few years ago, unfortunately I can’t remember what the conclusion was but if you Google around you may find it.
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