ET jak 2 positive

[Anne2751]

I have been on Hydroxycarbonide for two months. I have over the last couple of weeks started to have great difficulty in walking. My legs are swollen and painful to move, also the bottom of my feet are burning. Does anyone else have this and is it a side effect of the treatment.

[francesb]

Hi Anne, I really think you should see your doctor about this because of the swollen legs. Burning feet can be caused by this

nhs.uk/conditions/erythrome...

Which can be caused by high platelets. I get burning feet at night and I think lots of us do.

Please speak to someone about those swollen, painful legs, best wishes, Frances.

[jane13]

Frances is right - the swollen legs need looking at - see yr GP or go to A&E if there is a long wait - best wishes

[Mazcd Partner MPNVoice]

Hi Anne, I agree, you need to speak to your doctor about this. Maz

[Merry6]

Wow, thank you so much for asking this question! I may now have finally found what causes that intense itching under my earlobes and the recent painful swollen ankles and the blotchy red hands.... Docs all seemed to brush those symptoms off. Love that I have found this forum. This is my first post/reply as I'm a little shy but I read alot and send out my appreciation to all those brave posters xxx

[Mardigras in reply to Merry6]

Hi Merry, Yes that itching under the ears drives you nuts doesn't it. My doctor just looks at my swollen ankles and says "oh yes, odema". They seem to brush off all the symptoms. Even my haematologist looks at me with a raised eyebrow. Swollen ankles, water retention, fatigue, my age, hot and itchy hands and feet, ummmm. I do wish that they would log in here and just have a look. We can't all be wrong. I told my heam. about the website and he said "oh the internet, there really is too much on there". Last time I almost lost it and felt like giving him a slap. Good job I didn't eh! 😤😊xxx