Hello All
I am new to this site and currently have been having EM for about 2 years. I have yet to find a medicine that’s works well for me. I was on Effexor with Gabapentin for about 8 months but the Effexor caused severe side effects for me so I took myself off. I tried a beta blocker which also didn’t work. 2 days ago the doctor prescribed me cymbalta 60 mg once a day and it made me so sick as if I had vertigo. Can you please recommend what works best for you all?
Thanks
Megan
You should ask your doctors to try mexiletine. It’s a sodium channel blocker, the oral analog of the anesthetic lidocaine. The science behind why it can work is solid, as erythromelalgia is known to be caused by hyper-excitability due to mutation of the sodium channel NaV1.7. A few years back, the pharmaceutical company Pfizer tested a candidate compound as a selective sodium channel blocker on patients with primary erythromelalgia. Mexiletine works extremely well for me, but results vary. Its effectiveness seems to be either a home run or strike out for those who try it.
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I really appreciate your recommendations. I have a phone call into my doctor and will suggest it! Any other recommendations are greatly appreciated!
Hey there
I agree with the above re: mexiletine … not sure why it isn’t more widely prescribed for EM?? Unfortunately it didn’t work for me, but it’s the only EM drug I tried I think (other than OTC stuff like magnesium, antihistamines, etc) that had pretty much no side effects at all (a little heartburn, but nothing terrible). Whereas gabapentin, tricyclic antidepressants, etc can be pretty sedating, impact driving ability, etc.
Anyway, 60 mg cymbalta to start off with sounds like a lot? I think if I remember right the pills come in 20, 30, 40, 60 mg … My impression is the vertigo, etc will fade as your body gets used to the drug. But I wonder if a slower ramp up might mitigate these side effects (a pharmacist once told me this with gabapentin). Not uncommon I think to even break the 20 mg capsules open and divide the beads out, etc.
best wishes
Thanks standing_cat! My doctor says that he isn’t opposed to trying me on mexiletine but right now he would rather increase my dosage of Misoprostol ( which I have been on for a month with no results). This drug is primarily used for people with stomach ulcers which I don’t have but was worth a shot. He says there’s no real
Study other than on animals that show Mexiletine is used for EM.Not sure what that means because it appears other doctors have tried this on patients with EM. I appreciate your advise!
Thanks
Megan
Hi,
I have found 1 x 300mg Gabapentin 4 times a day and double up with the night time one. With these I take 300mg of soluble Aspirin with each dose. I find this helps but the best thing to stop the flares during the day is to keep my legs open to the air. If I put on full lenght trousers or jeans they flare within 10 minutes. I have also found that if I stop eating Mushrooms, Pepper and anything with Chilli in, it certainly helps. Makes for a boring tasteless diet but defintely no flares.
Hope that info helps you.
It means your doctor is not very good at what he does. Take these to him.
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Hi Megan
Good luck with the misoprostol, I hope increasing the dose proves helpful for you. I am interested in trying this medication myself. Keep us updated on how you fare? 
Funny thing - I had asked my derm about misoprostol at one point but we went in another direction because his sense was that misoprostol success wasn’t really seen beyond the Norway paper results (circa 2004). I’m pretty stubborn on trying anything and everything though 
best wishes
I have been on most of the tablets you mention with no success and with terrible side effects in many cases. At present I live in agony with the only limited relief I get being through frequent and prolonged meditation. I haven’t tried mexiletine, having basically given up on hoping to find something to relieve the flares which are occurring more frequently and for extended periods. I will try mexiletine. Thanks for the information.
I’ve tried so many meds for long periods of time over the last ten years and the side effects were so bad for me and not one improved my condition or the pain. I’ve been off all meds since November and I began Bobs protocol at the end of January when my feet looked like this. For the first time my severe pain and flares have decreased and I have more peace and hope in my life. Not attributing causality to Bobs for my improvement—not enough data yet, but I am gathering data on my symptoms and other variables and I’m starting to believe Bobs is playing a role. Everyone with EM reacts sooooo individually to the various treatments—very difficult process. I wish you the best.
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My doctor did end up letting me try the Mexiletine in which I have been taking it for a month as of today. I haven’t really noticed a different other than I have been really hot as if I’m having hot flashes but also have been sick with a bad cold and taking mucinex together with the mexiletine. I started with 200mg once daily
And didn’t notice much of a difference so the doctor advised I up my dosage to 400mg total a day, one 200mg twice daily. That’s when I ended up getting a cold and started mixing mucinex with it and within 2 days I had been so hot and my ears have been very hot. My ears never burned this much or this often. For the past 3 days I have tapered off and am
only taking the 200 mg of mexiletine once daily. I have a 4:30 appointment today with my doctor as a follow up to the mexiletine but I don’t know what to tell him. I’m not exactly sure what’s next for me. Any suggestions?
Have you tried any topical formulations? A compounded gel of amitriptyline 1% with ketamine 0.5% seems to be the Mayo Clinic’s preferred prescription for erythromelalgia. Another topical treatment would be a lidocaine patch. A more drastic option would be a systemic lidocaine infusion. Pregabalin (Lyrica) has also been found to be beneficial for some EM patients.
A teenage girl in Australia whose symptoms were resistant to a wide range of treatment options found success with low-dose naltrexone, described by her mom as “a miracle drug.”
A discussion of her case can be found here: A Small Victory (Low Dose Naltrexone)
However, since low-dose naltrexone has limited clinical research, it could be a challenge to get a prescription for it. There are no low-dose naltrexone pills produced and it must be made by a compounding pharmacy.
Mrehage1989 -
I had to be very careful with my mexiletine dose and timing. I found it felt similar a bit to calcium channel blockers (which I had tried earlier) which as you probably know don’t work for everyone. I had asked my prescribing doctor if it was vasoactive at all, because I read that it can cause heartburn + dizziness as potential side effects (eg, heartburn from CCB’s I think is due to the relaxing of the sphinctor muscles or whatever there … maybe?) He said “no”.
However, I found this later, saying Mexiletine blocks sodium channels, activates ATP sensitive K+ channels, and blocks calcium channels. It can help cerebral vasospasm and cause dilation. I’ve looked a bit elsewhere, and my sense is it can affect the same L type calcium channels as nifedipine etc, but a lot of this stuff is over my head!
I am trying a slower rampup on mexiletine myself soon. I am going to start at 50 mg. When I started at 150 mg 1x/day, I found it too strong/things were too hot all at once. I actually do well with a tiny dose of amlodipine, but will probably pause that and see if I get more benefit from the mexiletine instead.
Hang in there
Mexiletine may only be effective for the L858F gain-of-function mutation in the gene SCN9A, which encodes the voltage-gated sodium channel Nav1.7.
The apparent absence of pro-arrhythmic and other major adverse effects at analgesic doses of mexiletine points to a mode of action that preferentially affects pathological channels.
While I don’t know if I have the L858F gain-of-function mutation, as I have said before, mexiletine was immediately effective for me. I knew within 48 hours that it worked. It was like the switch turned off.
Perhaps I should have genetic testing to settle the question.
My doctor advised me to start taking the 200 mg 3 times daily so a total of 600 mg per day. I will gradually add that in within the next week to see what happens. He is willing to try me on the low dose naltrexone to see what happens with that. I’m trying to hang in there but so tired of the pain and no relief. Have any of you been to the Mayo Clinic? Something else my doctor has mentioned previously.
I have not. I do know the wait list is very long (9-12 months). The reviews I’ve read have been mixed. They’re excellent diagnosticians and very knowledgable, but don’t possess a silver bullet. Mayo doctors publish their research in peer-reviewed medical journals, so most of what they know is already publicly available with respect to treatments. Patients who have uncertainty in their diagnosis benefit the most from a trip to Mayo.
Mrehage1989
Can I ask what type of doc agreed to explore LDN with you? I’m interested in trying it, as it seems like it has a high potential benefit / side effect ratio. Thx! Hope you are able to find relief. Attached is a file I had on what mayo gives to patients, however I got this from someone else + don’t know how up to date it is. mayo_em.pdf (3.0 MB)
Hi standing_cat- He is a Rheumatologist. Honestly one of he best Rheumatologist I’ve seen so far and I’ve seen 3 before him. Thanks for the info on the Mayo Clinic
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Mrehange1989 -
Thank you! I just saw my one of my docs today in fact and he agreed to prescribe the LDN! I am excited to try. I don’t think it can hurt … though I’ve been wrong about that in the past haha.
Carterdk -
Thank you for the link. I still have the suspicion though that mexiletine might help regardless of whether someone has this mutation (or another pathogenic mutation). However tbh when a medical paper starts talking about activation current and repolarization and depolarization etc most of it is over my head lol… I somehow have the picture that sometimes the sodium channels can get upregulated / modulated / hyperactive when there is trauma, stress, immune issues, etc. Still, if you ever get genetic testing, would def. be curious to know your mutation status!
It also seems hard to predict what can happen in the human body compared to in vitro.
Can I ask you - have you ever tried any other drug that also targets sodium channels (eg, lidocaine iv, lidocaine patch/topical, oxtellar, cymbalta…) I would be curious how your experiences compared between them.
I am having a continuous lidocaine iv in a week or so, and my docs seem to have mixed opinions on whether there’s a difference in terms of outcome, whether I follow it with mexiletine. I had an outpatient iv and it felt great, like i had a numbing agent on all my nerves, for a couple days. I would be through the moon if I could feel that way all the time. I do not have any EM mutations.