Progression of EM, can it stay the same for years? Anyone got better?

Hi Guys,

I find a one piece of longitudinal research by Davis et al 2000 N= 168 follow up 8.7 years reports that ;

  • 14% patients had progression of symptoms from lower to upper and lower extremities, but those who presented only with upper extremity symptoms did not report progression down to the lower limbs.
  • Those patients who reported worsening noted an increase in frequency of attacks.
  • 31% reported general worsening of the symptoms, 27% stayed the same and 31% said their symptoms were reduced; 11% reported complete resolution of the symptoms.

Is this statistic true? Because i have the impression that every EM gets worse over the years? But this statistic sais that 25% of the cases remains the same.

I would love to hear your thoughts on EM progression.

Has your EM progressed? Have u got better? Is it the same?

Everybody is different and also, just like any autoimmune disease EM can get better or worse depending on the person’s health status. As I got older, my EM became more painful and more constant.

Agree. Everyone is different. I haven’t had flares in 5 years with treatment that has worked for me.

Seriously? So basically your symptoms are gone? No pain either?

I didn’t have the severe pain like many others describe, I had more of the deep buzzing neuropathic symptoms. At one point I was having spontaneous flares probably 30 times a day and my feet were red hot balloons. Now at most my feet might get really warm if I’m hiking or walking for hours but they cool down in 5 minutes if I kick my shoes off. Haven’t had the ballooning flares in years. I would just suggest not trying to predict your outcome based on anyone else. Good luck and stay positive!

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Can I ask what treatment that is? My daughter is now at 4 year and nothing helps.

This forum may present a skewed impression of EM because those who come here are looking for support and those looking for support are often struggling. Thus, this forum may collect a high percentage of the worst cases.

I take mexilitine and Lyrica. When we added Mexilitine I saw improvement within days and flares started to subside.

Wow that’s amazing! We are going to see my daughters specialist tomorrow. Can I ask what are your dosage?

Ditto for me. Though I take mexiletine and propranolol. I take 150mg of mexiletine 3 times daily.

But does these two medications help on flares/ redness? Arent those meds particulary to reduce pain?

I have only flares with redness, no pain. But i am unsure if that would help for that.

I didn’t have the severe burning pain like many people describe either. My symptoms were flares that were very hot to the touch with redness and ballooning.

They thought I broke a bone in my foot for almost a year and I developed a buzzing type of neuropathy (Lyrica started at that point). Then the flares began - first in the one foot but then in both and they realized something else was going on. It was a slew of doctors before I got the EM diagnosis.
The mexilitine made a differences right away on the flares/redness for me (I tried a couple other drugs first with no luck).

Thats really good to hear!

But how is your summers doing? Can you go barefoot without any redness or the warmth?

Summer is good, nothing like before. I don’t do a lot of barefoot cuz I need arch support but I wear sandals lots. If my feet get warm in shoes kicking off for 5 minutes takes care of it, but no flares or ballooning up with redness.

Fantastic to hear :slight_smile:

Can i also ask how often do you take mexilitine? Is it every day, or only when you know you will have flares(summer/training)?

Sure, I take it 3 times a day, year round. I tried backing off a few times and felt symptoms coming back so I just accept this is what it takes to live a normal life.

Susan has mostly covered your question, but i’ll just second what she said. For me, mexiletine stops the redness and flares from occurring, which then prevents any discomfort. On the rare instances symptoms do break through, sensation is reduced or non-existent and symptoms easily alleviate.

Ah ok thanks :slight_smile: How often do u take mexiletin then?

3 times daily like Susan?

Yep, I take it 3 times a day.

Ok, thanks.

But have to say that the amount you take sounds quite alot for me. Meds 3 daily, every day, is a bit. Is it safe to take it in such amounts? For the body/heart etc?