Jak2

Hello, my partner John has ET, he was tested for jak2, but this was not present. As his platelet levels don't seem to be stable, they are looking at using jak2 inhibitors. Has anyone heard of this or had this a treatment when jak2 was not present?

Thank you

[MichaelS]

Hello 'nic1h', Jak2 is a gene that seems to be part of the cause of ET, Polycythaemia and Myleofibrosis. There has recently been a breakthrough in dealing with this gene by the use of medication, in the last two or three years. It seems very effective for some people and is still being investigated by the authorities in the UK (NICE). There is a lot of information about JAK2 and the inhibitors on this site and the MPD voice website.

I wish you both well

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Thank you Michael - I'll have a read on the site

[Aime]

Hi Nic, I have PV but Jak2 negative but was told that there was another gene mutation which they won't test for because it is too expensive to do so and the outcome would make no difference to the treatment. My Hematocrit is kept down with venesection but I was told if my platelet count continues to vary, I will have to go onto meds for that(so sounds like I may be heading for ET as well as PV). I agree with Michael that you will find info on MPD website and you can always contact them by email and ask specific questions for the medics if you need to. Best wishes, take care Aime

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Thanks aime, wish you all the best too. We will have a look the website this weekend. It's all a bit confusing and takes a time to get head round