@A myMPNteam Member
These EM symptoms are probably the most perplexing of anything I face with PV. And let me tell you about the strange twist that has been occurring several times lately, occasionally in bed, but can pop up while sitting more often. It is an extremely hot sensation that starts from my feet but extends up both legs symmetrically. At the same time, my feet feel unusually cold. They may or not reveal any color change and no swelling. At the times when my EM flares, that’s how I and my hematologist describe it, my feet (especially toes and bottom of feet) become quite suddenly extremely red and swollen up to my ankles. It may improve with a cold pack, compression socks, and elevation, but may last for two or three days.

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A myMPNte...

I have heard of people using Alpha Lipoic Acid even at lower doses (100mg) really does help with these sorts of issues. It is diabetics supplement of choice with PN too so might be worth a try. I bought some from Holland and Barrett aand look forward to trialing it and will ask my doctor for her thoughts too.

@A myMPNteam Member I understand what you are referring to now. EM is listed as a symptom associated with PV on sites and mentioned in conferences. I just never heard it described as a flare. I know it's not a daily symptom and sometimes happens after a long hot shower. The microvascular occlusions that occur in my feet and toes (specific small areas like the end of one toe) are a symptom associated with ET. It's not always listed as one. I don't know why. If I did not take the 81 mg aspirin every three days, I would be in pain every day and night. It's a sharp stabbing pain (Ouch, Ouch, Ouch, my face in a cringe) with an underlying ache. I didn't experience this symptom until about 10 years after diagnosis. I may have had an EM flare once. I was stepping out of the shower and my left hand and to a lesser degree my right hand, became very painful. Immediately. My left hand was extremely red. It may have lasted a minute, but you know...when it happened it seemed like a long time. 😑😕🙂 this is not a symptom of concern for me because it has never happened again. I'm just sharing that I may relate to how it might feel. I was saying, "OUCH, OUCH, OUCH" outloud.

Conversely, once my left foot turned completely blue. An unnatural color. Not gray or slightly tinged blue but true blue. A color wheel blue. It didn't hurt. I sat on the edge of my bathtub and ran hot water over it and massaged it. My foot quickly regained natural color. It was odd. A rare oddity of ET. It has never happened again. I have read that the blue foot or toe is an ET symptom, but only on a couple sites. It's not a symptom that affects my life.

I've read peoples description of EM over the years. As you said, there isn't a treatment. People try to figure out how to prevent them.

All my best, Janet 😊

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A myMPNte...

I experience more than numbness and tingling. An ET symptom is burning stinging pain in the ends of toes and parts of feet. A baby aspirin every three days eliminates that pain.

Sorry, even though erythromelalgia (EM) is one of those rare entities seen in some polycythemia vera cases, it isn’t often mentioned here. My heme/onc observed it on a flare and immediately diagnosed it a couple of years into my PV. Occasionally, my feet (especially bottom of feet), toes, and sometimes ankles will accompany sudden swelling and beet red discoloration (microvascular changes) that immediately sends me to my PCP, where he will order a D-dimer and ultrasound to rule out blood clots, always negative. Finally, he agrees with me now that it is the EM acting up. It is now occurring more frequently, but my hematologist admits that there is no treatment. No research is in the works that sheds any light on EM.