JAK2 mutation positive

I would point out that with PV the symptoms vary from person to person.  My PV developed to MF over the years but I never suffered headaches.  Quite frankly I feel you should approach your GP or other medic you visit to discuss your symptoms.  You are likely to get much feedback from others who suffer this disorder and you will see how things can vary.  I have the JAK2 gene and my blood count is stabilised.  I've literally been right through the whole mill over the years.  I feel pretty well generally and remain active.  If you need any info don't ignore that available from this web-site under the PV heading.  Good luck.

Hi Tauseef,

Shahid Javed here (from KHI)

I've been enjoying migraine and mine often gets worse. My JAK2 was negative. HCT increases upto 52 (i keep it 45 to 48 max) while my WBC is always 10+

I agree with Peter that PV behaves differently with different people.

Stay blessed.

SJ

Hi thauseef. I too am jak2 positive. It means that we have polycythemia Vera.

Those who are not jak2 positive are called Polycythemia rubra Vera. If we have high red counts, we are then tested for Polycythemia Vera. My red count is still high, but my meds, Hydroxyurea controls it and also acts as a blood thinner. It does lower the immune system, but I haven't caught anything in 4 yrs. However, I always get my flu shots, and pneumonia shots. As a rule, I feel great. Sometimes take an afternoon nap, but work out, do zumba regularly, and can walk a couple of miles. We can live a normal life, if we listen to our hematologist and get regular blood tests, etc. Hope this helps.

 

Hello

I'm a 65 year old man that was diagnosed with JAK2 mutation after a stay in the hospital back in 2008. I had DVT in the portal vein of my small intestine...my intestine went gangrene and I lost all but about 40cm. They say I'll have to take warfarin for the rest of my life to keep those pesky blood clots from forming. Anybody out there know of any new med's that work better for JAK2 mutation patients that are safer and doesnt require monthly monitoring?

Hi Thauseef,

If you blood counts are normal, your dizzliness may be due to other causes. However PV progressed slowly. Keep regular exercise, and take balance diet.

I am a PV patient, but do not have any sickness, my platelet count is 702.

My oncologist prescribed Hydrea and Aspirin.

Richard  - Houston Texas

Ok so I'm 65 and diagnosed JAK2 Positive.  Had the Bone Marrow Biopsy and CD19 and 20 were rather prevalent (with mutation ~ 45 - 50 %).  I'm quite healty , Lift weights, shovel snow, build things , GRISWALD Christmas , etc.   I have no symptoms that I'm fully aware of and my CBC is nearly perfect.  I suspect your headaches are coincidental.  I have no idea what lies ahead for me.   I'm researching and it seems that worst case scenario is Leukemia.  I'm on my way to the oncologist here shortly and have my Pathology Report in hand.  I've reasearched most of the resultsa and now have comprehensive questions. 

Hi thauseef,

I'm a 31 year old female and was told yesterday that I have the JAK2 gene mutation. I originally had a blood test done because I was having headaches, dizziness and black spots in my vision. I have a high platelet count and I'm waiting to see my new Haematologist next week.

From what I have read about the conditions, I'm getting mixed messages. The official information on leukaemia.org tells me that the condition is fine, less than 3% chance of it turning into leukaemia, it can be treated with aspirin to minimise the risk of blood clots; then I have read sites such as this where people's Doctors have told them that they only have 15 years to live. I'm confused!

I see that you wrote your original post several months ago, do do have an update on how things panned out for you?

Thanks, Lisa