jak2 positive with consistent relative monocytosis

[Gooseey]

hi MPN community,

I am interested if others have also seen a history of both absolute and relative monocytosis with their MPN?

my monos count for past 20 years ( I am 58 now diagnosed 2,5 yr ago) has always been over .5 absolute bar 3-4 tests sometimes 1 to 1.1 currently it’s been sitting around .8 and I am not aware of any chronic infections

it hasn’t been a side effect of HU I’m on 500 mg per day it’s the same trend

my mutant load of jak2 was very low 6% i phenotype like PV but diagnosis ET platelets not that high but I started venesection July to get hct under .45

I noted my megakaryocytes changed from first bmb which to me didn’t really shout ET but they saw occasionally large ones lobated etc to jan 21 normal size less lobated than normal

it’s so frustrating trying to get answers and getting fobbed off or just told it’s ET as I know in my gut it’s not ET

like others I get night sweats drenching, bone pain my lower back 8/10 with pins and needles left leg and feels cold I get blurry vision sometimes fatigue well we lea4n to manage I follow anti inflammatory diet dint drink much alcohol exercise daily practice breathing but I’m tired of fighting to understand what’s going on why my serum calcium sits at high end of normal for years why now my serum albumin slowly decreasing now 34

sorry for jumbled message

have a myeloid NGS booked hoping it will shed some light

and speaking of light sending love and light and positivity to you all 🌻🙏

mantra…. Be like a sunflower ( face to sunshine)::: be like tortoise ( they win the race) 😊🐾🐾

[hunter5582]

It is not uncommon with MPNs to see some elevation in one of the leukocytes in addition to elevations in platelets and/or erythrocytes. I used to experience mild basophilia. It was never regarded as a big deal, just how my MPN presented.

It sounds like you are moving towards clarifying your diagnosis. You are understandable wondering whether ET is an accurate diagnosis. It is possible that this is a masked PV or MPN Unclassified. None of us would have any way to know that though. This is an issue to work out with a MPN Specialist rather than a regular hematologist. Here is a list just in case you need it. mpnforum.com/list-hem./

Given how symptomatic you are, I would suggest reviewing your care plan with a MPN Specialist. It may be that you would respond better to one of the other treatment options. It is interesting that your doc is recommending venesection. This would not be used for someone with ET. It is the treatment for PV or MPN-U. It is understandable that this would be confusing regarding your diagnosis.

Getting the Myeloid NGS sound like a very good idea. Hopefully, it will shed some more light on what is going on.

All the best.

[Gooseey in reply to hunter5582]

Thanks hunter you are awesome and hopefully if I get to Oz again if this is where you are from be great to meet

[Gooseey in reply to Gooseey]

Ps I also have basophils and ( mild eosinophilia seen in bmb and blood )

[hunter5582]

Would be delighted to meet with you if ever we are in the same locale. I live in Harpers Ferry, WV. I travel a good bit so get all over the USA. I base my MPN Specialist care out of Johns Hopkins, in Baltimore MD. Perhaps we will meet at a MPN event.

The multiple elevations in leukocytes does aopnf more like PV or MPN-U than ET. Sometimes it is not clear, however.

All the best.