Jak2 test

[Phoebe776]

Hello everyone,

I am 24 years of age with a kidney disease called nephrotic syndrome. My GP called me last week to say she was concerned of how high my RBC count was. So she sent an urgent referral to haematologist and ordered my renal team to do a jak2 test which I had yesterday.

I am so tired but yet my iron levels seem to be ok.

The problem is is all the immunosuppressant drugs I’ve been on can cause different types of cancers so after looking up about the jak2 test I was quite scared if I’m honest.

I have a little girl so to see some of the things it says I got a bit upset.

Has anyone had this test?

How long does it take to come back?

What was your results?

Thank you xx

[ladyanello]

If your doctor is concerned about high RBCs and testing for Jak2, there is a good chance they are checking for Polycythemia Vera - it is a relatively rare chronic blood cancer, generally manageable for a long time, frequently decades. Not to say it's always easy and of course there is a spectrum of illness severity. Your high RBCs may also be secondary polycythemia which is not uncommon and a frequent side effect of another condition or treatments. The key on both is to know what you are dealing with - if it is the cancer, please know it is not a death sentence once you have been diagnosed and you have an MPN specialist on your team. That is critical if the Jak2 is positive because that is the first step to an MPN diagnosis and you need a doctor who understands your personal situation - MPNs are quite rare and very individual experiences. I have had classic PV (that's how mine is determined) for 15 years now. It has its challenges and the symptoms can be very difficult but with good palliative care, and sometimes medication, you can live a good life with your little girl. I can't speak to the complications of nephrotic syndrome.

[hunter5582]

I have had multiple JAK2 tests as I am JAK2 positive. I was diagnosed with a MPN over 30 years ago before there was a JAK2 test. The how long to get the results answer depends on which test was ordered and where you had the test done. A simple qualitative analysis could be back in as little a 7 - 10 days. A quantitative analysis could be 14 - 30 days.

I am not familiar with nephrotic syndrome so I did a quick look at it and found this interesting and possibly relevant reference. Let me be clear, I have no idea whether this is relevant to you. It would appear that you have a very savvy doc who is making sure to find out what is going on in your case. You are very fortunate to have this doc.

austinpublishinggroup.com/n...

Please know that if your JAK2 test comes back positive that it is not the end of life as you know it. Despite all the scary stuff you will read if you Google it, a JAK2 finding is not terminal. The manifestations can be serious. You might already be experiencing that. Or not. Regardless, knowing your status will help refine your treatment and allow you to live a long life. Even if it runs out that you have a JAK2+ PV (like I do), the condition can be managed. At age 65 I am doing fine, managing challenges, and living a good life.

If your JAK2 test is positive, the best thing you can do is to see a MPN Specialist rather than a regular hematologist. MPNs are rare disorders and most hematologists do not have the KSAs to provide optimal individualized care. Here is a list of MPN-expert docs.

mpnforum.com/list-hem./

Look forward to seeing your little girl grow up and having grandchildren someday. I have two grown kids and one granddaughter. I plan to stick around for a good bit longer and see my granddaughter as an adult.

All the best to you.