JAK-2 TEST

[CelticCrow68]

 how long does it take to get results from JAK-2 test . My husband was diagnosed with Abnormally high red blood cell count and Abnormally high platelet count in May. Repeat blood test showed both increasing . GP hasn't made any referrals yet. He's already taking clopidogrel and candesartan because of massive ischaemic stroke in 2014. GP did bloods for JAK-2 on 11 July but we've heard nothing and GPhas made no referrals. He's getting lots of brain fog and fatigue beyond the normal stroke/brain injury issues. Daily nose bleeds.feeling lost and ignored.had expected a haematologist appointment by now. Only thing they've done is up candesartan as BP was really high.

[EPguy]

Do you have the HCT and Hb results? If these are very high (and apparently increasing quickly) Dr should be starting reduction therapy sooner rather than later, esp with the stroke history. No need to wait for Jak 2 test. This was my experience even without the stroke history.

[CelticCrow68 in reply to EPguy]

No they haven't actually told us what his numbers are. I should also add he Subarrachniod brain haemorrhage x 2 in 1986. Thanks for your reply

[EPguy in reply to CelticCrow68]

You should insist on having these red blood cell blood test numbers immediately, (HCT, Hb) you are entitled and with his history it's very relevant. Let us know what you find.

It does also seem his Dr is not MPN specialist, nor even well informed haem since Dr is not acting on what appears to be critical info. Even if he could have something else, an MPN expert is the best one to tell you that since it looks like MPN.

My 1st specialist was a regular hematologist rather than MPN specialist. But he still knew which tests to order and their meaning. In contrast my GP had no idea that HCT was important to my condition; it seems your husband's GP is similar.

[hunter5582]

It should not be too much longer depending on which JAK2 test the GP ordered. The symptoms you describe are highly suggestive of a MPN as I expect you already know.

It is not likely that the GP will know how to handle his case if he does in fact have a MPN like PV. These are rare disorders and most doctors, including hematologists, have very little experience with them. That is why it is so important to consult with a MPN Specialist. You may have to take extra steps to access this specialty care depending on where you live/which system you are in. Here is a list of MPN expert docs recommended by other patients. mpnforum.com/list-hem./

All the best and do please let us know how he gets on.

[CelticCrow68 in reply to hunter5582]

The other symptom he's had for about a decade is severe itching after showering and bathing

[hunter5582 in reply to CelticCrow68]

Aquagenic pruritis is another classic symptom of Polycythemia Vera and other MPNs. None of us can tell you whether or not your husband has PV or another MPN, but everything you describe is consistent with PV or another MPN. The more definitive answer will come from the JAK2 test and consultation with a MPN Specialist.

Note that if the JAK2 test is negative, that is not the end of the story. There are the rare cases of CALR positive PV as well as those who are triple-negative. Also note that there are two types of JAK2 mutations known, JAK2v617f (the most common) and JAK2 exon 12. If he does test JAK2 positive, the diagnosis will be definitive. No matter what, diagnosis and care need to be done with a MPN Specialist.

ALl the best to both of you.

[Lilliegarden]

GP told me my JAK2 results would take 3 days but they took 3 weeks

[Cityreach]

Hi, I was told 7-10 days took 4 weeks, started venesection before JAK2 result came back

[Solyesh]

I thin it usually takes about 2 weeks depending on the type of test. Hope you get some clarity soon - definitely sounds like a possible MPN - do you have a specialist nearby you can get a consult with?

[Hopetohelp]

3 weeks. Maybe worth a chase up. Good luck

[Threelions]

7-10 days I was told & mine were back in 8.

[ainslie]

It’s maybe wise to get the Hct and Hgb numbers , if the Hct is over 45 he needs a venisection, because if over 45 and has PV he is at increased risk thrombosis wise, hopefully your Haem is on top of it. Itching is the first symptom then brain fog etc that I had 3 years prior to diagnosis.

[Cakeface]

Both of mine took 4 weeks. It sounds very much like symptoms of Polycythaemia Vera.

I personally would be requesting that the GP makes an immediate referral to Haemotology, bearing in mind your husband's history.

Good luck

[Jelbea]

Do not leave this any longer as Epguy says. You must be proactive. I was treated very badly by my Gp. He sent sample for Jak testing and ages after told me local hospital would not do this test for a GP, only haematologist clinic. Nine months later when I was eventually seen my illness had progressed a lot and I was straight onto chemotherapy drug. At present NHS is in such a mess you have to push to get what is necessary. It is your husband’s future which is at stake. Don’t hold back.

[Lola367]

Hi, I am in the UK and my JAK-2 test took 3 weeks to come back when I was diagnosed last year. Best of luck and agree with the other comments about being proactive and chasing up a referral to a haematologist.

[lynnieb]

When I had my JAK2 test, my haematologist said it actually wasn't that relevant. It is more about whether there is a causal effect for MPN, or if it is idiopathic. Don't get caught up getting worried about the JAk2 result; living with an MPN is hard enough - the constant uncertainty. is exhausting. I empathise totally with you and your husband and hope you find some help. Be well x

[Meatloaf9]

Hi, my blood was sent from my local Doc to the Mayo clinic and I had the result in less than one week. Hope you get your results soon. Best.

[Peetzil]

Hi so sorry to hear your husbands troubles and good he had you asking questions on his behalf. I had JAK2 it took 3 weeks for result in Scotland. I’ve just had it done again this time for JAK2 Exon12 mutation & again they said it would be 3 weeks for result. I’d be beating on the GP’s door demanding urgent referral to Haematologist. You’ll find excellent support on here. Best of luck & keep us posted how you get on.Peetzil x

[Hocus58]

Hi I have just recently been diagnosed with PV and my JAK2 blood tests took just over 3 weeks to come back. I’m in Scotland.

The haematology doctor I seen ordered venesection straight away and started on aspirin before the test results came back based on the Hg and HCT results.

Like previous replies ask for these blood results and a referral urgently. I have taken and acted on advise from others on this forum recently regarding asking for bloods to be done and so glad I did.

Good luck x