Has anyone else been diagnosed jak2 negative?

[Harrietjane]

I was diagnosed with ET in 2001 with high platelets over 600 and put on clopidogrel. Last year the consultant decided that since I was jak2 neg he discharged me from outpatient care and withdrew the medication,though my platelets are still around 540.Is anyone else in this situation?

[Hidden]

I was diagnosed with PV in 2007 but I am also jak2 neg.

[Murphy1]

I was diagnosed in 2011 with ET and also Jak2 neg, I normally take aspirin daily, platelet count around 600 but since I e just had a baby and am breastfeeding I won't take it so having daily clexane. Although jak2 neg still under consultant as I still have ET!

[catkinspolymer]

I have had et for 20 years but was tested jak negative some 8 years ago. I still take Hu but my platelets climb without it . at 540 it not dangerously high so I can see why you are off medication . Should consider baby aspirin however to reduce the stickyness of the platelets

catkins

[Flaxy in reply to catkinspolymer]

I was diagnosed earlier this year with ET, confirmed after bone marrow biopsy, no symptoms really and only discovered during routine medical (platelets 860). JAK 2 negative, platelets constant for last 6 months between 800-860, medication daily aspirin. Have since felt unclear as to how conclusive a diagnosis of ET really is.

[ETphonehome]

Diagnosed with ET in 2003. I am Jak2 Neg.

Flaxy, diagnosis of ET is never conclusive. Docs come to a diagnosis on the balance of probability.

[Flaxy in reply to ETphonehome]

EPphonehome, appreciate the response and that basically backs up my own feelings on this situation, consequentially it is difficult not to be concerned that it could be something else.

[ETphonehome]

Apologies Flaxy, what I was trying to say was often it is not clear whether we have ET or PV as both conditions share similar characteristics and it is not unknown for diagnosis to change over time.

The diagnosis of an myeloproliferative neoplasm is pretty conclusive.

[nicki2]

i was diagnosed of having et in1994 i was still in my 20s but i did not have any bother until my 30s i had a hepatic infarction so my consultant put me on hydroxcarbamide and allpronil tostop getting gout that was only for a while also motillium to stop the feeling sick i am now down to 4 a week and the consultant has me bag every three month she is brilliant b

best wishes

nicki

[Flaxy]

I hope this isn't a stupid question, if it is please forgive me, but can anyone explain if there is a difference in symptoms/outlook etc. between being ET JAK2 positive or negative?

[rubyrubyruby in reply to Flaxy]

My understanding is that research has shown that 50% of people with a MPN are JAK2 positive, but I don't think it makes any difference to symptoms or outlook.

[StreetPastor]

I was diagnosed with ET in November 2011 with high platelets 1845! I'm also Jak2 neg.

[Aime]

Hi, I have PV but Jak2 negative. I have bloods checked every 8 weeks at the moment as counts had stabilised. I was told I had PV although I have never had a bone marrow biopsy. I am going to wait until Feb visit to haem and perhaps ask for a second opinion. It is all very confusing but there are other genes which may have mutated (as discussed at forum in November in London) which I know I have not been tested for. Sorry if thats not much help, regards Aime

[Reflex4 in reply to Aime]

Hello Aime, I find your comment very interesting as you have been diagnosed with PV without having a bone marrow biopsy, I was always led to believe that a biopsy was the only way to truly diagnose MPN's. Jak2 yes, that can be done by a blood test, now I'm really curious - My partner was diagnosed with ET by the way last April and Jak2 neg, he did have a bone marrow biopsy. Maybe I will start a new thread and ask the question

[piggie50 in reply to Reflex4]

Hi reflex4, I was diagnosed with PRV 8 years ago and only had a bone marrow biopsy in September last year. PRV can be diagnosed with just a blood test. I also had a scan just after diagnosis to confirm the size of my spleen, which was enlarged. I was told that a BMB was not necessary for diagnosis.

Regards x

[sparko35]

I was diagnosed with PV earlier this year jak2 neg on Aspirin and venesection have blood tests every 2-3 weeks

[dave71]

My 16 year old daughter has ET & is JAK2 negative, diagnosed by bone marrow biopsy, her level reached 1500 before being lowered with hydroxycarbamide, but now is taking interferon injection & aspirin, levels now at 350

[lindyloulou]

Hi

I am Jak 2 negative and today was told I have a mutation of the CALR gene which they say gives a definitive diagnosis of ET. I was diagnosed in 2008 following a routine blood test, levels were 2000.

[tey_joanne_1984 in reply to lindyloulou]

Hi,

Can i check with you what medicine you take for this sickness? My hubby has similar case with you but his platelet count is ~1200.

[Shelly1960]

I am jak2 neg

[pastorterry]

I am JAK2 negative and after 2 years of extensive testing my diagnosis remains PV. Went for a second opinion to a supposedly good Hematologist. Drove 240 miles to see him only to be told that since I was JAK2 negative there is no way I had PV. He suggested a few other things and they all tested out negative. What a waste of time and money. I am on a aspirin and phlebotomy regiment and have my blood checked every two weeks. I have read that 95% of PV patients are JAK2 positive, how does that negate the 5% who test negative? I remember the old adage, if it looks like a duck and quacks like a duck; it must be a duck. Oh, speaking of quacks...........

[Meleaarnold7 in reply to pastorterry]

Whew! I'm jak2 neg also but have an epo of 7. I asked my doc for a bomb and he says no. He flat out said that since I'm jak2 negative I don't have pv. I'm seeking a second opinion.

[Meleaarnold7 in reply to Meleaarnold7]

I had asked the d oh for a bone marrow biopsy. He said no. Dann auto correct! Lol

[Kikoki in reply to Meleaarnold7]

Hi and happy new year !

I would like to ask for.epo 7 if its normal value?

[DoubtingT]

Join the club of the Unknown ! Tested -ve to all known mutations, however the quack has me down for PV rather than SP because my EPO was low (<3); however after doing a LOT of research I now find that there is an SP pathway that can give you a low EPO ie thru the degranulation of Mast Cells produced in an inflammatory event. Seeing a new specialist next week to try and find the truth.

[Notlikecandy1 in reply to DoubtingT]

My husband's EPO is 3. He is neg jak2 and neg no Mpn. On bone marrow. Htc is 58.hemoglobin 21. Va oncologist is doing weekly Phlibotmies . Still insists it's pv. But he smokes..so I think it's secondary. What's happening with u now?

[DoubtingT in reply to Notlikecandy1]

My new Haemotologist/Oncologist has reclassified me as Secondary as I do not meet any of the WHO primary diagnostics; we strongly suspect the cause was a fairly complicated path from a yeast allergy that results in reaction that creates Il2-5 which are capable of reacting with EPO-R Jak-Stat mechanism. I still need to monitor my Hct/Hgb but only need Phleb if they reach 50/150, my anemia is improving and I now have a lot more energy to get on with life. Taking Voltarin 50mg to suppress any inflammation caused by the allergy, seems to be working

[DoubtingT]

No, my Hematologist said it was not necessary ! I think he considers that a low EPO is enough to differentiate between SP and PV.

[DoubtingT]

Which is fine for those who have classic PV, BUT there seems to be a sub-set of people with Secondary Polycythemia who also fit these criteria !

[DoubtingT]

Yes, in at least 97% of cases EPO is generally a marker for the type of Polycythemia; and for years Doctors have been classifying High EPO as Secondary and Low EPO as Primary.

However over the last 10 or so years there have been a small number of cases where patients (usually triple negative) who present with a Low EPO but are eventually classified as having SP and not PV. There seems to be a corresponding factor in that a lot of these cases have a history of elevated Mast Cell production (Hives, Inflammation etc), which I have recently discovered can on degranulation lead to elevated levels of the IL2-6 and STAT-5 cytokines; these in turn can activate the EPO receptor leading to Hemoglobin production; in short more red blood cells with lowered EPO.

[Notlikecandy1 in reply to DoubtingT]

My husband's EPO is 3. He is neg jak2 and neg no Mpn. On bone marrow. Htc is 58.hemoglobin 21. Va oncologist is doing weekly Phlibotmies . Still insists it's pv. But he smokes..so I think it's secondary. Also on his bmb the Asxl1 was duplicated 41 times so doctor is concerned about this. He also has high Trypatase 51 but no allergies. None of it makes sense. .sigh, been at this since August 2018. Its June 2019 now and live in NC