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ET and sore feet


I have ET platelets around 750 on Roferon and aspirin

I have just had surgery /reconstruction on my ankle 8 weeks ago

Would love to know if anyone has experienced problems after foot surgery with foot pain attributed to ET & erythromelalgia (Redness, throbbing and burning pain in feet)

My physio is concerned about nerve damage but I do wonder if it is made worse by erythromelalgia which for me is frequent anyway

More importantly anyone got any suggestion for relief

2 Replies

Hi Ssnbll25 I have suffered with sore toes on both feet since my early 30's and I usually found 2 paracetamol would help after about 20 mins. However, in my mid 30's I started taking junior aspirin daily (as it was known then) and noticed my toes were never sore unless I forgot to take my daily aspirin. I never understood why but just relieved it had stopped. I was diagnosed with ET/PVR in 2011 when I was 52 and now it all makes sense. Hope you can find some relief as I know how bad this can be. Best Wishes Indy


I don't know if you are already being prescribed it but I was prescribed Allopurinol for erythromelalgia and that along with hydroxycarbamide and aspirin cleared it up. Although it is also a gout medication it seemed to make the erythromelalgia disappear. I think the tiny blood vessels in the toes become engorged when they cannot cope with the thick blood and the excruciating pain results. I really sympathise with you as I had it for months before diagnosis and mine did not result from an operation but I have heard that an op can upset the platelet production, making them rise. I hope you get some relief soon.

Best wishes and good luck.


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