Diagnosed with erythrocytosis, jak2+, is this pv?

This is my first post here and I am very happy to have found this community. I'm a 34 year old male who needs to quit smoking... I was recently told that I have the jak2 v617f mutation and I will be starting hydroxyurea in the nextfew days. My RBC is 6.85, HGB 20, and HCT is 62.2 even though I have had two phlebotomies in the past week. Currently I get tingling in my fingertips and before the phlebotomies my right pinkie tip turned blue and felt like someone smashed iteach time it was touched...this is what led to me get looked at. I find myself always tired and getting frequent headaches that nothing can seem to fix besides laying in bed for hours. Even though I feel exauhsted I cannot sleep.

Any help or advice would be greatly appreciated. Should I go see a GP for the headaches or back to the hemotologist? One last thing, I also have had sharp pain by my right hip and sometimes under my right armpit. Any chance it could be related?

Thanks again....glad I found this place.

2 Replies

  • Tim,

    I am PV JAK2+. I am also on Hydroxy. Quiting smoking will benefit you no end. The pains your explaining are a symptom I am afraid. It seems exercise even mild walking helps. The headaches are also a symptom, you need to drink more water, esp with going on to the new meds. I drink a min of 3 ltrs a day. Tiredness is something we all suffer from, try and get a nap in during the day, about 40 mins or your suffer at night. You are probably suffering from a lack of sleep due to too much going on in your mind. Its a lot to come to terms with and understand. Speak to your heamatologist. We all understand what your going through, but there the ones with the medical information and can advise properly. My coping techinques work for me but might not for you.

    good luck let us know how you get on.


  • Hi TimVA, welcome to our forum, I hope you find it helpful. I have passed your question to Prof Harrison for her advice and she has said that you should speak to your haematologist about the headaches as she thinks they are blood related, and also to tell him/her about the pains in your hip and armpit. I hope you get it sorted out. If there is anything else we can help you with please ask, and don't forget to have a look at our website mpdvoice.org.uk. Kind regards, Maz

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