Just wanted to share that my severe chronic EM responded slightly to sodium channel blockers. For those of you that dont know i am on a trial of intravenous lidocaine infusions (lignocaine) every 6 weeks. Following an infusion my symptoms eased slightly - for around a week. ...Any relief ,for me ,is akin to a miracle .This could prove to be another option for some of us . I had tried everything - all prescribed medications and OTC - nothing has touched my EM. Reading through the discussions ,I dont see that many of us, if any of us, have ever been offered any type of blocker drug - be it calcuim or sodium . Interestingly -the new XEN402 TEVA drug currently in the pipeline for worldwide license is a strong sodium channel blocker
Alongside the IV lidocaine - trying 2 other drugs Mexiletine (oral lidocaine- same amine), and Lamotrigine(anticonvulsant drug ). Both of these are sodium channel blockers. Specialist is working on the premise that i showed a small ,but positive, reaction - so fingers crossed.. I am eternally grateful that this UK Dr is so proactive and compassionate.My EM is now systemic - even my scalp, face , vaginally. After an acute onset I am totally disabled by it ,constant flaring 24/7 - its just relentless- intolerable. For all of us that suffer this wicked wicked syndrome... the smallest of respite is a blessing.
So:
Lamotrigine - did nothing except cause terrible side effects - muscle weakness, cramps.
Mexiletine - if you can get pass the side effects - tritating up very slowly- it seems to kick in at 3 months. Very up/down but taking the edge off- they need to get dosage right.
Verdict - I am far from pain free ,but at 5 months IV lidocaine and then daily oral mexiletine (sustainability) , is best treatment thus far.
Erythromelalgia is so rare that Pfizer has located just a handful of families in the U.S. to participate in the trial, says Ruth McKernan, chief scientific officer at a Pfizer unit in Cambridge, U.K., that focuses on pain.
Really! They have got to be kidding... Maybe Pfizer needs to look at the amount of people on here that are from the U.S. that have EM.... What a joke!
what I have read so far is that they are looking for people with inherited EM - I just don't understand why just inherited EM - how should that make a difference? And not only that - I have never read anywhere how a doctor is able to determine whether EM is inherited or not. Just because a person may get it at an early age still doesn't mean it's inherited. Last but not least - the pain for people with EM is the same.
inherited or not, primary or secondary....etc..I agree with Domina , the pain is the same - more or less degree. The fact is that sodium channel blockers are obviously the 'buzz' angle in terms of chronic pain per se. Havent read that any of us US , Uk or elsewhere EM 'ers have been offered this type of drug. As i said, apparently several sodium channel blocking type drugs are out there albeit not designed for EM. We know EM is so damn rare, but also rare as its so hard to get diagnosis... numbers to treat are just skewed!.All we can do is try to educate our Drs , specialists. Take them latest research, photos, diaries, discussions from this site or TEA website(Footsteps mag).
Nothing touched my EM. Im totally disabled by it... my entire body. If sodium channel blockers can cause a small fleeting response in me i just wanted to share it with you. It gives hope for us all. We just must keep strong and making our voices heard. My treatment is not linked to clinical trial Pfizer research. My own specialist has taken the initiative to investigate and try me on similar blocking substances already out there. If my specialist can do this - maybe worth a try asking or showing them the blocking research or even Dr Cohens medication sense. I have some research papers downloaded on my desktop if anyone interested or wants me to sent copy via email. Just PM me with your address.
I became pretty much symptom free once melixetine was added to my regimine of Lyrica. It’s going on three months now. I’m a little skeptical that I cycle where winter is my worst time so I guess time will tell. Good luck mads!
Great news Susan. Im so thrilled for you. What a blessing. I truly believe stuff is out there that can bring some relief- albeit marginal. Wust we need to amalgamate and all get on same page. IV infusion lidocaine and melixetine seem to be real hopes. I firmly believe that blocker theory is the way forward. I do hope you stay symptom free . EM is like a weed- it just goes everywhere and when you think you have it under control- it starts to grow and hit back with a vengence. Keep me informed. Really like to know how you doing.Would you like to be friends- ill send you request.
Im really interested in knowing how long you on lyrica - dosage, and melixetine doses. Lyrica didnt help me at all. Just left me feeling like i had drunk 2 bottles of wine - and i dont drink lol!
This is a VERY good point! I am glad to see others have noticed as well. I have met 2 people with EM - one is a mother of a child that was in my youngest daughter' pre-K class - both living here in Fayetteville, NC. I also had someone tell me there is a lady, that attends the same church as I do, that has EM. I'd feel weird trying to find this person. As rare as EM is touted to be, it's odd that 3 (possibly 4 or more) could be in the same city. How many cities are in the US? Factor in the estimated number of people who have EM, and it begins to make one wonder if there isn't an environmental factor that is playing a role. I would be VERY interested to see a map of the US that has little dots indicating an EM sufferer. Perhaps two maps, one for primary EM and another for secondary. I think if it were possible to do this, we may see clusters of people in certain areas. Then looking into what the areas (where clusters are found) have in common with each other, chemical/industrial plants or a history of water contamination, for example, could shed a lot of light on the cause, control, prevention and ... dare I say it? Yes, I dare! CURE!
Erythromelalgia is so rare that Pfizer has located just a handful of families in the U.S. to participate in the trial, says Ruth McKernan, chief scientific officer at a Pfizer unit in Cambridge, U.K., that focuses on pain.
Really! They have got to be kidding... Maybe Pfizer needs to look at the amount of people on here that are from the U.S. that have EM.... What a joke!
Hi Cheshyre, I understand what you are trying to get at but I think that is not possible to achieve (now). There are probably still too many people out there who have EM but don't know it because the doctors that they go to don't know about it and therefore don't give the right diagnosis.
My dermatologist who knew immediately what my red hands were all about told me she had had 3 other patients before me with EM. I am just wondering whether more and more people have EM or more doctors are slowly becoming aware of this disease. The Internet is helping to spread the awareness I think - I diagnosed myself before I saw my dermatologist - Google had a few articles about EM and I saw that the description and photos fit my symptoms to a T.
It's been a couple of months since your post - how are you getting on?
Craig
Susan said:
I became pretty much symptom free once melixetine was added to my regimine of Lyrica. It's going on three months now. I'm a little skeptical that I cycle where winter is my worst time so I guess time will tell. Good luck mads!
Sounds promising. Please do keep us updated. Since the weather turned cooler here in the Midwest, I can feel my EM more and it has involved more of my right foot. My symptoms are mild compared to others, but I know this is a progressive disease and its just a matter of time.
We’ll it’s been several months and I’m still doing very well I’m happy to report. As the weather turns cooler I’m noticing a very slight flushing in my hands every once in a while but that’s it. I’m very thankful my doc suggested the melixetine! I hope it holds up through the winter.
just saw your post. I have chronic EM widespread - its everywhere- body, scalp, face - even internally. I have tried everything - nothing worked. Was told couldnt be EM all over my body - same as you, but it is. Im disabled and bedridden with it but holding out hope now with the sodium channel blocker treatment route. I tried Lamotrigine - it did nothing either(despite being sod channel blocker). I, and cheshirecat , have found IV lidocaine and mexiletine are the only treatments that have eased symptoms, flares etc.... Cheshirecat has been on these longer than I and has had a 30% reduction in symptoms thus far. I have only been on mexiletine for 7 weeks but am now noticing fleeting changes in some symptoms. My dose is being increased after Christmas. Im really hopeful , for the first time and i mean hopeful! Whilst the teva drug -specifically for EM is being developed in USA, lidocaine and mexil are the last hope for both cheshirecat and I. Another lady starsmurf is also on these(i think) . Both are on here so email them too. We are all here to help each other cope with this hell. . I find it hard to tolerate drugs as so weak now but ultimately side effects are the lesser of all evils. I have no choice. I want to walk again, be able to wear clothes, work etc...... Side effects also do ease up over time and with careful management.
If you are in England (so am I), why do you need private insurance? NHS will have to supply as unethical to withold treatment. I went before FDA commision twice to get the mexil, which is unlicensed for use in Uk.
Message me and ill give you my phone number to talk better.
Just saw your other posts- bless you. Please message me ASAP. Ill phone you and we can talk. Yes, i think that person may be me. I only respond to lidocaine and its analog form mexiletine. Mexil is taken to sustain relief from lidocaine Iv which is short lived. Im now just on mexil as after a while IV lidocaine doesnt seem to work as well.
I was put on the waiting list for lidocaine infusions at the beginning of September but still wIting to hear. In the mean time I got results back from London showing lesions on my brain and then a few weeks ago was diagnosed with ms, not sure if it’s all the ms stuff being thrown into the mix that’s caused the delay in getting infusion appointment or just NHS being slow again…?
I went to Kings College in London over 18 months ago to see dr Bennett, he specialises in em. He moved hospitals after my tests and now works in Oxford. There was a mix up with him moving and the person taking over my case and sadly it took me 16 months to get the results, nobody had reviewed them even tho it said on the clincial report that I satisfied the McDonald criteria for dissemination in space and consistent with demyelination (MS) Dr Bennett was great tho, both during the visits and trying to chase up my results and getting them to me. He even replied to emails working an hour even when sent at 8pm on a Sunday.
Can I ask why you think it will take 2 years before being referred for lidocaine infusion…? I guess I’ve spent over 5 yrs trailing different meds but unable to take them due to side effects or those that didn’t effect me badly didn’t work.
Hope you get things sorted soon x
That sounds really rubbish with Oxford not acknowledging the referral. I emailed dr Bennett privately when I hadn’t received my results and he was brilliant chasing them up and then referring me to neurologist locally re the ms. Kings did all the relevant tests but didn’t follow up with any results so I defused to go back there. It was my pain management specialist in Norwich that referred me for lidocaine, not sure how long the waiting list is tho. Sorry it’s going to take you so long to get the chance to trial it.
I’m not sure about whether he’s treated anybody with lidocaine before, I was highly medicated when I visited him. I was on 3000mg gabapentin daily plus citralopram, asprin and something else I can’t remember the name of. I’m med free now because too many problematic side effects.
Dr Bennett doesnt adminster, he will just recommend treatment. You need to get to pain clinic. The most you will wait is 3 months or less if GP referral. These big specialists defer treatment to pain specialists as a rule. All this treatment is on NHS. If you have EM diagnosis or not- photos, diary etc... and get to pain management clinic. They administer lidocaine as its comes under anaesthetic umbrella. Pain clinic also will argue your case to the FDA for mexil. Mexil is unlicensed for use in Uk so proves problematic as you need FDA approval. The hospital then will supply and monitor you.
As i said. Message me and ill phone you. Ive gone through this battle, maybe i can give you some help.
Dont forget- in UK you choose what hospital you are treated in. If your local is not forthcoming- you can go elsewhere. 2 years wait- no way. Alternatively, lodge complaint with PALS. That will get things moving straight away. As previously stated i am being treated with lido/mexil. Actually, seeing/waiting for dr bennett just prolongs matters. Pain management clinic - GP referral to specialist.thats the way to go-.
Sorry you’re struggling Elizabeth. I think maybe a visit back to the drs is jn order, if only to ask if you should be feeling any benefit by now. I know some meds take a while before they work. I hope you get some relief soon x