Essential thrombocythaemia jak 2

Hello everyone :) 

I was diagnosed last year at the age of 20 with my platelet count 879 .. I have had a few issues and one blood clot on my lung.

I have been put on hydroxycarbamide for 8 months , but lately had incredible pain in my bones and found my platelets have risen . They believe the treatment isn’t working for me anymore . 

anybody Ever had any issues taking hydroxycarbamide as to platelets rising ? 

thank you 

  • Hi and welcome to this little corner of the community but sorry to see you joining us.

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  • Hi, I'm having the same problem as you the pain is constant and I have difficulty walking. My consultant has done a number of tests but nothing conclusive so far. She is now going to test me for rheumatoid, bone disorders or something to do with my protein levels. We stopped the treatment for a fortnight but it made no difference amd my platelets levels raised quite quickly so I'm guessing if if they don't find another reason for the pain , I'll just have to grin and bear it, but it really gets you down, I am also extremely tired and lose my balance a lot. Will let you know if they find the problem

  • My consultant now thinks that the pain is caused by fibromyalgia but after consulting my gp I Am none the wiser they just give me a link to follow. I don't know if I'm supposed to self diagnose or what all I want is some answers  and a nights sleep . Don't think that's too much to ask 

  • Hi

    I had the same thing after my diagnosis - the platelet count came down and then surged back up again. My consultant said that it was quite normal and a small increase in the dose got it controlled again. I've been stable for 18 months now, except when covid knocked all my blood counts down alarmingly.

    I was diagnosed after a blood clot in a leg artery with a platelet count of 1700. I now take two hydroxycarbamide capsules and one clopidogrel tablet each day. My counts are stable and OK for now. I hope your hospital team soon find a treatment plan that works for you.