So for me, my EM is not very painful at all. I get a hot feeling in my hands and feet but it doesn’t really hurt. My main symptom is that I get bright red colored skin, particularly in my hands. It’s always been extremely embarrassing for me, and I was just wondering if anyone has tried anything that has reduced their discoloration. Any information or tips would be greatly appreciated!!
Mexiletine, a class Ib sodium channel blocker, stopped my flares (including redness, heat, discomfort) from occurring. As you are young and likely have the primary form of erythromelalgia caused by genetic mutation in the gene encoding voltage-gated sodium channel Nav1.7, you’d be a good candidate for mexiletine.
Thank you so much. I’ll talk to my doctor about that medication!
Good luck! Have your doctor read the following case study from JAMA Dermatology, published in 1999, regarding mexiletine therapy for erythromelalgia.
Update: unfortunately my doctor wasn’t comfortable prescribing mexiletine, as he said the risks outweigh the benefits. He did prescribe me some beta blockers so we’ll see if those help at all with the redness and discomfort. If the beta blockers don’t help at all I may try to switch doctors because I’m really interested in trying the mexiletine.
That is nonsense and misunderstands the risk/benefit assessment. What specialty is the doctor treating you and do they have prior experience treating erythromelalgia?
Have you tried the physician directory over at the erythromelalgia association? This will at least put you in touch with a doctor that has seen the condition before.
I agree it is nonsense. He completely refused to prescribe any sodium channel blocker. I had a rheumatologist who diagnosed me with erythromelalgia, but he ended up referring me back to my primary care physician, as he said the condition was “benign” and that they could handle treatment plans. My rheumatologist did not have any experience treating the condition and neither did my primary care physician (my primary care physician is the one who refused to prescribe the mexiletine). So now I have an appointment in March with a dermatologist experienced with treating erythromelalgia, because I couldn’t find any rheumatologists near me who did.
Thank you for that. The closest doctor I could find was a dermatologist about an hour away so I have an appointment with him in march.
You can also try to email firstname.lastname@example.org and ask for doctors in your area, perhaps you’ll find one that’s closer.
That’s disappointing but not unexpected. Doctors who have never treated erythromelalgia before, and have little experience prescribing mexiletine, are often scared off by its black box warning. They don’t recognize the CAST study, upon which the black box warning is based, isn’t applicable to the broader population.
Have you tried elevating your hands above your heart? This helps me, but not long term. I also run luke warm or cool water over them briefly to even them out.