A little update and question. Been a while since I was on. I have PV with JAK2 + but always at low level 1-3% which technically is below WHO criteria but BM biopsy showed some markers.
HCT was high along with other bloods but following 2 venesections which made me anaemic and low iron. JAK2 run again and is now not being detected ??? What does this mean? I am potentially not PV at all. My HCT also has stayed in good range but does go up and down which is weird apparently. I do have a high symptom burden and some of them not top 10.
On another good note, I met with a Functional Medicine Specialist in Edinburgh and feeling quite positive and she is looking at testing and my whole body/systems/medical history. I have some co-morbidities which I am sure are all impacting high symptom burden.
Anyway, would love your thoughts on JAK2+ not longer being detected.
😀
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LittleLuna
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Looking at your labs, it would seem that you don’t have PV or maybe early stages; your platelets and WBC remaining consistent even with phlebotomy. You have a normal EPO & I assume it’s not “low normal”. I am sort of it the same position… however, I’ve never had a positive jak2 mutation (I tested negative) with a normal EPO. I’ve had high HGB & HCT, but never high red cells & my HGB & RBC’s drop up and down on its own as well. I’ve had a ton of tests done. (Reticulocytes, B12, LDH, full iron panel, ferritin, uric acid) all totally normal. Two heams I’ve seen say that PV is rare & it’s essentially very rare / unusual according to the MPN doc I’ve seen to have jak2 negative PV. I’m being monitored around every 3 months, which after one phlebotomy my RBC’s, HCT, HGB are all still normal. I’m glad you found a doc that will look at if you’re true PV or not.
Was diagnosed PV last June following BMB and the equivocal JAK2 which was at 3%.
Was talk of MPN U but with improvements in certain symptoms when prescribed aspirin MPN Specialist said it was classical PV. But now with JAk 2 gone…..no idea.
Wait to see haematologist and see what she says in October.
As I said, I have lot of symptoms but is not an easy condition to Dx or figure out.
I can agree with you there. There needs to be way better ways to diagnose then what we have today. The JAK2 mutation is by definition means red blood cells, but the WHO diagnosis mentions nothing about the red cells, an MPN doc I’ve seen mentions microcytic red blood cells as the hallmark of PV even before diagnosis. I have no classic PV symptoms like yourself, but I do have numbness in one arm that extends down to my hand / fingers at time & aspirin does nothing to alleviate it for me even when my counts and red blood cells are totally normal. Please let us know what your heam says in October.
THE WHO PV diagnostic criteria specifically includes red blood cells as a key part of the diagnostic criteria. emedicine.medscape.com/arti...
According to 2016 revised World Health Organization (WHO) guidelines, diagnosis of PV requires requires the presence of either all three major criteria or the first two major criteria and the minor criterion
Major WHO criteria are as follows:
Hemoglobin > 16.5 g/dL in men and > 16 g/dL in women, or hematocrit > 49% in men and > 48% in women, or red cell mass > 25% above mean normal predicted value
Bone marrow biopsy showing hypercellularity for age with trilineage growth (panmyelosis) including prominent erythroid, granulocytic, and megakaryocytic proliferation with pleomorphic, mature megakaryocytes (differences in size)
Presence of JAK2V617F or JAK2 exon 12 mutation
The minor WHO criterion is as follows:
Serum erythropoietin level below the reference range for normal
The JAK2 mutation may cause PV or ET of MF. It does not always cause the erythrocytosis that is the hallmark of PV. In fact, some people carry the JAK2 mutation with no apparent disease, a condition called Clonal Hematopoiesis of Indeterminant Potential.
The numbness you describe in the arm is a fairly common PV symptom. Proper evaluation is needed to distinguish paresthesia from peripheral neuropathy from something else. Chances are that it is a PV-related microvascular issue but you do not want to make assumptions. This is something that needs assessment by a MPN Specialist. Note that if this is a microvascular issue then you may need more than one low-dose aspirin per day.
Thanks for that info, I’ll make sure to ask my MPN specialist next check up I have to ask him why he thinks I don’t have PV with my negative jak2 & all the negative PV tests I have done & will touch base on my arm problem.
Hi. Would love to have name of yr functional medicine specialist in Edinburgh, as my symptoms continue to be worse than my numbers suggest. I have PMF, Am taking ruxolitinib 15 mg twice a day, allopurinol, atorvastatin, (20mg twice a day)a blood thinner whose name escapes me ( brain fog) and Verapamil for BP control. And transfusions every couple of months. B12 shots monthly. And I feel lousy. Not helped by non user friendly new patient portal and new electronic patient records at English hosp where I ‘m treated. Makes it hard to access data. However, I do go to Edinburgh as well ( had hoped to be spending more time there by now, but that’s another story) and a functional approach might help.
Could you message me yr functional doctors name? Many thanks. Rachel
Glad to hear you are consulting with a Functional Medicine doctor. This discipline can be very helpful in managing chronic health conditions. These docs are great at looking at the body as an integrated system.
It is a hard to sort out exactly what is going on. You may be someone with PV with unusually low JAK2 allele burden. Perhaps you are fluctuating above and below the sensitivity of the lab being used. It could also just be a lab error.
Note the iron deficient and anemic mean two different things. Iron deficient = iron levels low. Anemic means low RBCs/HGB. Iron deficiency without anemia is the purpose of venesections. Provided that your HCT/RBC/HGB are at target then the iron deficiency is what was intended and you are not anemic.
It is possible to overshoot the mark and induce anemia with venesections. That happened to me. My HCT got all the way down to 32%.
Suggest you review your status with your MPN Specialist. Please do let us know what you learn and how you get on.
Thanks Hunter. As always, your advice is so amazing and welcome. I will digest and learn more from this and ensure I have this down pat when I meet my haematologist next.
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