Yesterday was my appointment. I came prepared with pictures and was desperate for his help. He almost didn’t believe me. I have raynauds also but that’s completely different. He was telling me your hands could be in recovery mode from raynauds not em. I was so frustrated! I kept telling him I know the difference. When I’m active or go outside where it’s 100 deg. My hands will automatically start getting red, throbbing and shooting pains, veins bulge out. That’s not raynads.hes supposed to know about em. Did blood work but he sent me home with prednisone. I didn’t want to use prednisone and gabapentin. I’ve heard some bad things about gabapentin. I asked him I’ve heard from this forum mexelitine could help. He said that’s topical. Really? I didn’t think it was topical. Asked about beta blockers. But he didn’t. So I have to wait another 6 weeks for another appointment. Does anyone have any success with prednisone or gabapentin? _
Hi there
I think the thought is that if the EM is caught early enough (within ~6 months of onset) that it could be reversed via steroids. My neuro also told me there is some recent evidence to indicate that non-inherited EM can be autoimmune in origin. EG -
“The similarity of the phenotype of inherited erythermalgia to that of the adult form of the disease raises the possibility that an activating autoantibody to [the sodium channel] or another regulatory protein in the nociceptive dorsal root ganglia and sympathetic ganglion neurons could produce the adult sporadic form of erythermalgia”
(have no idea why they used a different spelling lol)
from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3418791/ (adult-onset case getting better with IVIG and steroids)
But from just reading around the EM forums I think steroids can make things worse or better … I’d be careful esp. if you’ve had symptoms for a while.
Gabapentin is a common thing to start with (one of the first things I started with). I don’t see how it could make someone’s EM worse though it has side effects
Seems like you are just unhappy with this doc though … Maybe it’s worth trying different docs until you find one you can trust more? My impression with these things is that if, from the first appt, I’m trying to plead / convince a doc of my situation or what drugs that will likely help / not help, things will never really “improve” with that doc.
Best wishes
I was put on prednisone for 6-8 weeks when it was initially presumed I had rheumatoid arthritis. I was prescribed the maximum dose possible within days of symptoms first appearing. I can say unequivocally prednisone had no impact. My blood work also showed no indication of autoimmune activity.
Edit 1: Unlike most community members, my EM symptoms were not insidious. My onset was explosive.
Edit 2: The woman treated in that paper was put on low dose prednisone, just 4 mg. I was put on 60 mg of prednisone, a level 15 times stronger! I tapered, but held at 40 mg for about a month. It did nothing.
The 3 mexiletine capsules I swallow daily suggests otherwise. It sounds like he didn’t know what he was talking about.
Thanks so much for your responses!! It means a lot when I get feedback 
Every Rheumatologist I’ve had, doesn’t listen and has a God complex. They are also only able to diagnose with some sort of blood work because most are not great doctors. I believe you really need to be a “top doc” to really be a good Rheumy, one who follows the research. Autoimmune disorders can wax and wane and may or may not show up on blood work if you are not in a flare.
Mexiletine is a pill. There is no topical. The closet topical is lidocaine cream. U could try lidocaine cream otc it’s 4% strength . The cream is helpful for some however it’s hard to use on your hands and hard to penetrate the feet. The lidocaine patches work best on feet . Carter doctors took a systemic approach with sodiumchannel blocker mexiletine and he had some favorable results .
I don’t think nuerontin or prednisone is dangerous.
I am sorry you have had to deal with yet another doctor that doesn’t understand. It is soul shattering to me when another door closes in my face from a medical professional who I thought could help. I find half this battle is wasting energy we don’t have trying to find a doctor to help.
I am on 1200mg of gabapentin and I have been on it for 3 years due to nerve damage from a cervical fusion. It really doesn’t help my flairs but it helps me sleep at night.
I have also started taking baby aspirin, 2 in the morning and 2 in the evening and I have noticed a big difference. I went from 3-4 flairs a day down to maybe 3-4 a week now.
Hang in there and keep fighting. Remember how unique you are having EM and it will take just as long to find that Unique doctor to help.
Rachel
Gabapentin helps a little with pain, but not much with flares or swelling. Tramadol helps a lot more, but I still need a fan day and night. Mine is secondary to
MS.
I was on high dose prednisone for a concurrent condition. Did nothing for em and related small fiber neuropathy and offered tons of other side effects. There is some evidence it helps with new onset em. I avoid gabapentin and doesn’t offer much help for em. It sounds like you don’t have a good relationship with this dr. Look elsewhere.
I believe EM and Raynaud’s are related and might be ONE and the SAME condition. It appears many people suffer from BOTH. I try to manage to get into the sweet spot of temperature ( not too cold, not too warm ) which is easier said than done, depending on your activity level at the time.
Gabapentine or Lyrica has proven very helpful for EM in many patients so I wouldn’t discount it. I’d try Lyrica 1st if I could because it has less side effects. I don’t like it when people say a particular drug “doesn’t offer much help” when we are all so different. What works for 1 doesn’t another. Lyrica kept me off disability for a decade. I do think Mexiitine is better though. I take 150mg Mexilitine 3x a day and 200mg Lyrica 2x a day. I think I may be able to wean back my Lyrica now that the Mex has fully kicked in. It’s a friggin miracle drug and it would be my 1st recommendation. It’s helped a lot of us.
When I have brought up Mexilitine to both my PCP and my Rheumatologist, both were adamantly against it. Said it’s a black box drug and no way were they willing to prescribe it for my EM. So instead I’ve started CBD oil along with my Cymbalta and Lyrica and after only a week it’s definitely helping. I’ve needed to do very few soaks. I started on Gabapentin but it didn’t work for me. Lyrica does though. They both have side effects but there seem to be a few less with Lyrica. But don’t fooled, they are both nasty drugs. How desperate we are though.
Mexilitine has less side effects than Lyrica. Your doctors are not informed on EM as Mexilitine is really one of the best drugs for this disease. EM for many of us is over excitability of Na channels and that’s what Mex addresses. There is plenty of documentation on this. You are certainly taking Lyrica off label. Mex at 450mg per day spread over the day is less than 1/2 of what you would take for a heart condition. From another post I saw today Steven Nouvella at Yale would probably help you out more if you can get into see him. I saw him a decade ago, but there was a lot less known about EM. I tried all the creams from Mayo and they either made me worse, or no effect. Mex and Lyrica are the only drugs I’ve found that really provided help. Both help calm Na channel over excitability, but Mex is better than Lyrica however Lyrica is better at neuropathic pain if you also have SFN. I’m not a doctor, but I’d find one that really understand EM and the problems we face. I’d also reach out to the admins on this facebook page. https://www.facebook.com/groups/ErythromelalgiaCommunityChat/
I’ve tried both ànd neither helped. I fact I have been taken a small amount of prednisone for PMR and it doesn’t help my EM. Mexilitine does come in pill form. I tried it a number of years ago and had a bad reaction from it. Good luck to you. Patty M.
Pain meds like tramadol did nothing for my pain or flares. My ME also come on suddenly and huge flares. Pregabalin helps me tremendously as well as low dose aspirin. Doctors are reluctant to diagnose ME because there are no blood or other test to confirm it, and it is rare enough for lots of them not to come across any in their career.
Sorry, EM not ME, bit of finger problem
Dear S,
Print up info on EM. Go to a pain specialist and get help. I have a newish pain specialist who was thrilled to have me in his practice.and wanted to transfer my EM treatment to his practice. I have reached a place of near normalcy with a regimine of Cymbalta , Lyrica, Mexilitine, and CBD oil under the tongue. Many of us also have Raynauds which is a kick in the pants.
We all are different here and I’m just telling you what works for me. Good luck you hottie. Patricia
Thank u so much for your response
How long before u noticed results from mexiletine. I started One day ago . No bad side effects . I took with food.