Newly Diagnosed ET

Having been very fatigued and a couple of chest infections since Christmas my doctor decided to do a few blood tests and then I began to feel like a pincushion until she decided I needed further investigation and referred me to Haematologist - two weeks later more bloods and BMP and then a very worrying wait. Early April I got the diagnosis that I have JAK2 Positive ET and started on Aspirin and HU and my platelets have gone down a little now taking 2 x 500mg a day and have another review on Monday, although I am very new to this I am so grateful my doctor didn't just say rest and it will get better. Does anyone else have a few good day followed every so often by one were it is a struggle to get out of bed in the morning.


4 Replies

  • So sorry to hear your diagnosis .But at least now you know what it is, you can face up and fight. I have PV so it's similar also on HU and JAK2 pos, I too feel so tired some days but I have learnt to pace myself, you have to do this and be kind to yourself. Don't start to feel guilty if you need to rest, that is a big no-no as far as I am concerned.

    Our outlook is better than some other kinds of this horrible illness, so hopefully we can relax a bit with that info at the back of our minds. Good luck to you and remember you are not alone .

  • Thanks bordeaugirl fortunately I have a good and understanding boss.

  • Yes i wake up tired and it will wear of some what during day then wham its back and i find it heard to get motivated to cooking evening meal im jak 2 pos with ET found out few month ago on Asprin and being monitored 2 monthly but will be starting hydrocy like you regards Holly

  • I have been diagnosed ET Jak2 for 3 years now and take 2x500 Hydroxy daily and 3 on weekend days. It was suggested to me that I take them in the evening so that side affects are minimised and I have to say tired and aching legs are all I get that I put down to my MPD,

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