Hi,
Does anyone else suffer from sore bones? In particular my shin bones on both legs are very sore to touch. I'm PRV JAK2 -ve.
Thanks!
Hi,
Does anyone else suffer from sore bones? In particular my shin bones on both legs are very sore to touch. I'm PRV JAK2 -ve.
Thanks!
Yes for sure. I am MPN jak2 pos unclassifiable, meaning I have a bit of it all but none in particular is rearing its ugly head. Bones ache day and night, waking me up when I turn in my sleep. All bones seem to have pain but leg and hip are the worst. If my Yorkie dog jumps up on my legs, its very painful, leaving bruises. I was on Hydroxy last year but now have regular venescections.
You will find you are not alone in this, so don't despair. I hope you find some relief in your mind that this is very common in MPN, although some doctors will dispute it has anything to do with MPN.
I cant give you any advice on how to deal with it apart from have a word with your haematologist.
Best wishes
Anne
Hello cwayman
My husband has PV and JAK2 also, and his worse symptom is sore bones. He started on hydroxy about a month ago and that seemed to trigger the bone pain (he had muscular pains before). The odd thing is that 'bone pain' was not even listed as one of the many side-effects on the leaflet. That made us both anxious (Leukaemia fear) so I googled myself onto this forum, where I got loads of reassurance. (New member needing support) I asked him just now if his shins were affected but not particularly. With him it's the joints more than any other part - his fingers and elbows. He is convinced that it's the hydroxycarbomide that is causing the pain as it does its stuff. You have come to the right place for support and information. It sounds so obvious, but having loads of people with similar experiences normalises this condition and makes it easier to accept and live with.
PS One of the bits of advice I got from this forum was to use a heat pad on the affected areas. I bought one from Boots, which is like a mini-electric blanket and my husband has it on his office chair. It has helped I think, and I used it myself a couple of times when I felt a bit chilly!
Hi, he skin and bones on both shins are very sensitive and sore if i touch or knock them. I have ET Calr positive, really difficult to know what causes what with this condition. Any tips would be appreciated.