Jak2 Negative with Suppressed EPO

[mkentish]

Does anyone have any experience of increased Hb (195 - I'm a 40 year old female) which resulted in having several more tests done. My Jak2 came back as negative but my EPO is showing as being suppressed. My doctor is a bit baffled. Has anyone experienced the same? Thanks so much! x

[Tess74]

Hi welcome to the jak2 neg club. My advice would be to request a bone marrow biopsy. Roughly about 5% of people with true PV test negative for the jak2 but they're discovering new mutations all the time. A bone marrow biopsy will be able to give them a better picture of what's going on with your marrow as well as check for mutations and it's honestly not as barbaric as it sounds.

Good luck x

[mkentish in reply to Tess74]

Thank you Tess74 , really appreciate the feedback! x

[hunter5582]

you may find the Molecular Biology presentation to be helpful as you are trying to understand what is going on. mpninfo.org/conferences/201...

There is literature on the JAK2 Negative PV issue. Here are just a couple.

onlinelibrary.wiley.com/doi...

ncbi.nlm.nih.gov/pmc/articl...

Hope this helps. Please do let us know what you learn.

[mkentish in reply to hunter5582]

hunter5582 thank you SO much, I can't tell you how helpful you've been. I've been so uncertain and anxious, your support has been hugely appreciated!

[mark382]

I'm JAK 2 negative. Diagnosed with PV 12 years ago. My haemaglobin is about 132 last time and Ferritin level 4, but then I do have venesections. I had last time, 2 weeks apart- June last year. I have very low EPO. MPN are rare, but it looks as if JAK 2 negative is even more rare. I've never had a BMB and it's never been suggested and must admit I've never volunteered for one. I have read that in the case of PV a BMB isn't used as a diagnosis, but acts as a marker as a starting point should the disease progress.

[mkentish in reply to mark382]

Hi Mark, thanks so much for commenting. With your Jak2 being negative, do you mind me asking how they reached the diagnosis? I don’t have confidence in my dr and feel like she’s sweeping me under the carpet, so any info would be gratefully received!

[Tess74 in reply to mkentish]

Hi mkentish, you need to keep at them and make sure they find a reason why you have high red blood counts alongside a low epo and what is there treatment plan etc. I've felt like I'm fobbed off loads of times, just keep at them, if they tell you its secondary you need to know WHY it's secondary and always bring up the epo level. Good luck x

[mark382 in reply to mkentish]

Sorry for being slow in getting back to you, haven't been online for a while. I don't mind you asking, but not sure I can be if much assistance. I had numerous blood tests and had scans if liver, spleen and kidneys. This was to rule out secondary tumours that can cause Secondary Polycythaemia, which fortunatelywere all negative.. I believe the decision was made on haematocrit and haemaglobin levels. I also had very low EPO. In all honesty I didn't pay a lot of attention to what they were doing and how they arrived at my diagnosis. It was 12 years ago and all I was told was I made too many red blood cells and it made my blood thick. MPN, or blood cancer was never mentioned. I did ask the question last year - do I have an MPN and the answer was yes. I suppose, the other advantage I had was that my GP, who was brilliant, told me it was PV and my haematologist told me it was Primary Polycythaemia. The big difference is I have total faith in haematologist. That goes a long way in accepting diagnosis and treatment. I hope you can get some satisfactory answers and treatment. Take care.

[mkentish in reply to mark382]

Thanks Mark, really helpful. I hope that you're keeping well and wishing you all the very best.

[mkentish]

I finally have my blood results and they don't mean much to me, any guidance would be great. I'm a 40 year old female for context. Haematocrit 0.545, haemogloblin, 18.0, epo 3.5 and ferritin 16..... Thanks in advance!