New research study reports positive results from Mexiletine

Hi Guys,

We always aim to bring you the latest in EM research and news. Just released is a French study 'P610T mutation in Nav 1.7 sodium channel in a family with primary erythromelalgia' (Justine Avez Couteurier et al, 2014 ), which disseminates a great improvement in EM pain with the sodium channel blocker Mexiletine.

Anyone else taking Mexiletine? Community members would love to hear your experiences

Thank you :)

BTW: We have several posts on sodium channel blockers and Mexiletine. Just use search button in discussion forum :)

107-P610TmutationinNAV1.7foundinprimaryEMFrenchStudy2014.pdf (628 KB)

Just looked it up and it wouldn't do for me! The same sort of things as Pregabalin if you have blood problems and liver problems which I have, plus other medications clash.

Looks promising! I am going back tomy rheumy in two weeks, I will suggest trying Mexilatine for my EM, right now we are trying Cymbalta, it had limited success but now it is no longer working. I started it during those 2-3 cold months in California, when my feet actually will not heat up that much, so it is hard to gauge the effectiveness.
The concern will be adverse effects on the heart and liver, but the old ticker is strong so should not be a problem.

Thanks for this!

I'm currently compiling a list of treatment options should my current approach fail to resolve symptoms. The most recent rheumatologist I saw did diagnose me with EM. She was suspicious of my elevated Hb/HCT and sent me back to the hematologist who treated my anemia. The hematologist ordered a phlebotomy, which was performed Thursday. Initial results seem favorable. It hasn't resolved my symptoms, but they have diminished. I was able to go to the gym yesterday for the first time in 5 weeks! I wore cold packs on my knees under my pants just to be safe. My feet were a bit warm by the end of my work out (which lasted 2 hours), but manageable.

The hematologist has me scheduled for another phlebotomy in 2 weeks. I will need at least 1, probably 2, and maybe 3 more to get to the level she wants. She wants to drop my HCT to 44%. It had been 53%.

I really want this to resolve. Still, I'm compiling options in case it doesn't. Thanks for the info.