PV positive & Jak2 neg - good thing??

I am in the same situation. I have all the symptoms but am JAK2 negative. It's crazy! Looks like my blood draws are going to get closer. I was every three months, but now down to 6 weeks. Good luck and keep the faith.

I'm in observation period and I'm negative too. My doc advised 20% of the negative can be false. Just had more labs and my levels are still consistently high. One more in Sept and she will confirm and start treatment. I'm going g to ask too but I thought it may have something to do with how they approach treatment.

Am I understanding right that your hemoglobin and hemocrit are high, you have PV symptoms, you're Jak2 negative and they haven't definitely decided you have PV?

Actually she advised me she believes I have PV. She ran and explain all the tests and said I believe you have this but because the Jake came back negative she placed me under observation for 6 months to do labs every 3 months. If labs are the same over this 6 month period she said she would confirm the diagnosis and start treatment. I've had 3 month labs and they are the same, high rbc and hematocrit. Will do again Sept and also see her for confirmation.
I've had elevated white 2 years ago, off the charts. They tried to get me in hospital but covid over crowding kept me out. Treated me for that infection got white back normal but took a month of 2 antibiotics. My doctor is a part of cancer center hemotolgist/ oncologist. I am a proactive type, ready to do what is necessary however, I have alot of trouble with energy then feeling tired and unproductive makes me not a happy person so I'm ready when it's time.

Sounds like every doctor has a different approach. I was getting crashing headaches, extreme fatigue, hands ache badly etc. I got tremendous relief from the headaches after 3 phlebotomies and gone by 5. I still battle with terrible fatigue. I like you, I'm very unhappy to not have my usual energy to work & have fun but I have some really good days, I now know when I'm feeling great I can't do too much, I pay for it the next day.
Hope you get some relief soon.

Stay strong 💪 ✨️ 💓

It's crazy but yes I am in that same situation. And to top it off both my mom and her mom had blood disorders that eventually took their lives.
I'm not sure that all doctors are up to date.

I agree, I dumped my first one who was positive I did not have PV, I trusted my GP more, found another doc who I really like and my GP wrote the script for the phlebotomies to get me to 13. Had 3 draws done before I met with the 2nd HemoOnc doc and he confirmed.
BTW, the first arrogant doc was dancing around my test results. My sister was on the call with me and she finally ask, So, does she have PV or not and he said I do. He cost me 2 weeks of suffering with debilitating headaches.
I'm all about 2nd opinions, 3rd and 4th if needed. We all have to go with our gut, push with questions and be our own advocate. I'm blessed with an amazing MDVIP doc who is an excellent diagnostician.

Happy 4th everyone, happy birthday America 🇺🇸 💙

I had a doctor in Houston that I really liked and who believed I have secondary or non cancerous PV, but he moved. So it was back to the original hematologist who says I have skin tags causing my high blood numbers. Never mind that I can list almost every one of the symptoms that I have that match case book patients.
Fortunately, doc has scheduled me for labs and phlebotomy when I feel it's time. I know my body after 72 years and can pretty much tell when my hematocrit is high.
In the interim, I am searching for a new doctor, but living in a small town I am limited with choices. So I am searching the Houston base doctors.
Good luck to you.

I had a similar situation caused by taking prescribed testosterone. I am JAK2 negative. High hemoglobin and hemocrit. Stopped testosterone and had phlebotomies for 12 months until the hemoglobin number reached 17. This is considered secondary polycythemia vera. All is good now.

Very interesting, I'm a little perplexed again and will talk to my HemoOnc doc on the 20th and ask specifically why both oncologist I've seen say it's definitely PV. There must be something in my bloodwork? I haven't had a bone marrow biopsy yet.

Thanks for responding and that is wonderful you don't have the cancer!

Happy 4th to you and the entire group, stay strong 💪