Burning Feet

[Mistymountain]

After I started taking hydroxycarbamide for Essential Thrombocythaemia I experienced extremely unpleasant burning sensations in my feet after I had been in bed for a short while which prevented me sleeping. This lasted for many months and then stopped - I don’t know why. It started again two nights ago. Sitting with my feet in running freezing water (last night for two hours) allowed me eventually to go back to bed and fall asleep with my feet uncovered by the duvet. It doesn’t happen during the day, only at night when my feet are elevated in bed. Has anyone else had this problem? Please help!

[hunter5582]

There are two possible sources for the type of burning pain you are describing. It can either be a microvascular symptom like erythromelalgia or a nerve issue like peripheral neuropathy. Hydroxycarbamide could help if it was microvascular or potentially be the cause as neuropathy is a potential adverse effect. This is an issue that requires a proper assessment by your care team. Note this warning

Call your doctor at once if you have: numbness, tingling, or burning pain in your hands or feet; rxlist.com/hydrea-side-effe...

Suggest that this should be treated as an emergent issue and requires prompt attention.

Please let us know what you learn and how you get on.

[Phantasia]

Hi, yes I had this issue after being on Hydroxyurea for 7 months. Not just my feet but lower legs including knees.I told my haematologist and she immediately took me off it. Turned out to be peripheral neuropathy and it continued for months after I stopped taking HU.

I still get an occasional flare up but they are very mild compared to when it all started.

If it's only occurring when you go to bed it's very likely to be neuropathy.

I couldn't bear it and was greatly distressed by it.

I couldn't sleep and therefore could barely function.

Let your haematologist know as soon as possible.

My advice is to stop taking the medication and try an alternative if it's warranted.

At the moment I am only on aspirin and so far so good.

Best of luck.

[Lasbrisas1]

DRINKING LOTS OF EVIAN HELPED MINE...Maybe you are dehydrated.

[Mistymountain in reply to Lasbrisas1]

That’s certainly a possibility thanks so much. I’ll try to drink much more, tap water for a start, as in Scotland it’s very drinkable.

[Winchie]

I had burning on the bottoms of my feet and toes for a few years before I started hydroxy. Once I started the medication, the burning stopped.