First of all, merry Christmas everyone, I hope everyone is enjoying the holiday season!
I'm 34 years old, diagnosed with ET in 2019 and recently been put on anagrelide 1.5mg/day to decrease platelets level. Its slowly but surely doing its job
I was told by my specialist that anagrelide would be something smoother to start of on. I have to say I struggled so much at the beginning of the treatment, had to take time off work as the fatigue was too intense and many more side effects. Thankfully side effects have mostly fade away! Happy days
I've notice since the beginning of the week that my right foot, the side of it and a bit underneath, are getting very warm, like burning, for a very short period of time, like 5 seconds, and then it goes away, and then comes back. It happen lying down, walking, standing up, sitting down.
I've checked my legs, besides from my feet being stiff and painful around the articulations and joints, I don't seem to have any bruises or anything like that.
I've never had any thrombosis episodes and was wondering if anybody else would have had such weird thing happening for them ?
Thanks!
Written by
Maella
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I would be sure to run this by your hematologist. hopefully that doc is a MPN Specialist as many are not familiar with all of the manifestations of MPNs and side effects of the meds used to treat.
It sounds like possibly two things going on. Joint pain is pretty common for people with MPNs due to the systemic inflammation we experience. Excess inflammatory cytokines are not our friend! The burning pain you are describing could be a microvascular symptom. These are are seen in the feet with people with MPNs, though usually starting in the toes. It is a function of how the blood cells interact with the vascular endothelium. I was experiencing this when I was off of the aspirin. It stopped when I went back on the aspirin.
Do please know that my experience may not be the same as yours. Be sure to consult with a MPN Specialist about this issue.
Hey there, thank you so much for getting back to me on this ! The hemato that helps me work with mpn specialists and put me on anagrelide indeed, I will definitely raise that to her, thank you so much for your help !
I get exactly that same heat, but it includes the toes. It's rare and never thought much about it, but your mention makes it more interesting. I don't have the joint issues.
I'm on ~500/day HU + aspirin with blood numbers good.
I came across this old Voice post, but this "erythromelalgia" may be a longer lasting heat than we have:
I'm ok with it, actually feels kind of nice to warm up my other foot with it. I'll take it over the other maladies that are in the misery package.
But it's clear many MPN's have this to a much more serious and prolonged extent than I do.
A sort of related subject, I just learned that Long Covid can cause spasms and vibrations like a cell phone in your chest. I get that too, but like here never thought much about it till I read of it.
I experience the same thing Maella! Have never really given it a lot of thought, just put it in the bucket of weird and wonderful MPN symptoms. Mine is intermittent, usually happens when I’m lying in bed, occasionally extends to palms of my hands and feels hot and sometimes itchy.
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