It’s been awhile since I posted. In June I started to have regular flaring again, so I decided to seek further medical care. After fighting with my insurance provider, I found a new doctor that prescribed mexiletine. He is an anesthesiologist and pain specialist. He’s actually quite good. He is young, but has already treated EM multiple times.
I’ve had a favorable response thus far to mexiletine. I began taking it August 1st and haven’t had a flare since that night. Since flaring was occurring at least a few times a day, that’s substantial improvement. Most days this week I haven’t had to use any cooling method at all. That doesn’t mean all my symptoms have disappeared. My knees still often feel sore during weight bearing movement and have erythema upon standing. However, while seated or lying down they usually appear normal. What has disappeared are the flares. My knees are not getting hot or bright red.
I only increased to 300mg yesterday. I took 150mg the first week. I will increase to 450mg next weekend. I had no discernible side effects at 150mg. After the increase yesterday, I did feel fatigued and had some muscle soreness. Today I have felt normal. Thus, I seem to tolerate the medication relatively well.
My new doctor also prescribed a compounded cream of ketamine, clonidine, gabapentin, and ketoprofen. I have only used that once, as there hasn’t been a great need for it. The one time I did use it, it really seemed to numb the area.
I did a discussion search and found quite a few others have taken or are on mexiletine. I hope sharing my experience helps others. I’ll provide updates as warranted.
I don't know, Brenda. I don't have an official diagnosis yet by someone experienced with EM. I'm working with a dermatologist, neurologist, and anesthesiologist / pain specialist directly, plus they consult with other physicians. The doctor on my team with the most experience treating EM is not yet prepared to say that's what I have. If I am diagnosed with EM, then I will see a geneticist.
Just to update, I increased to the 450mg dose yesterday. It continues to work relatively well. I'm still not getting the flares like I used to. I continue to have some symptoms, such as discomfort on standing and modest erythema. As mentioned, my symptoms are almost entirely in my knees. My feet sometimes feel warm to me, but I've never had a flare in my feet like in my knees. I would judge the erythema I get upon standing to be even fainter now than it was last weekend.
I've not yet tried to exercise to see how it would respond to an increase in internal body temperature. At rest, the medication is very effective. After my initial response was favorable, I had hoped increasing the dose would make all my symptoms disappear. Thus far, that has not happened.
When I increased to twice a day dosing, I did begin to have side effects with my evening dose. I felt a pins and needles like sensation in my hands and arms. I judged that possibly the propranolol I was taking with the single dose the first week, and morning dose the second week, is why such effect did not occur at those times. Once I began to take 10mg of propranolol along with the evening dose, I no longer felt that sensation. I've had no further side effects since I began to take each dose with propranolol.
It sounds like you are onto something significant there - I hope it continues for you and only wish I could get the Mexiletine here in Australia - The Doc has prescribed it for me no problem, BUT even though it shows up on the doctor's prescribe list and also on our PBS (Pharmeceutical Benefits Scheme) here - I cannot get it as the company that was bringing it into the country is not doing it anymore as there just wasn't the demand for it - which makes my blood boil, why can't I get it here in Australia - the way we are being treated here is worse than a 3rd world country - I have been trying to get into see the Pain Management Clinic at Canberra (60 miles from here) - the National Capital City of Australia and they sent me a letter yesterday, that they will notify me about an appointment in due course and that the Waiting Period is OVER 12 Months ....
I am absolutely shattered with this news and totally disgusted about it all - it is no wonder I have given up HOPE now, and the future looks extremely bleak for me - I can't seem to get any help from the medical profession in this country apart from Pregabalin which is slowly losing its effect for me and my pain level is increasing weekly ... I don't know how much more bull$hit I can take from the mongrels .... I am heading back into the Despair Pit once again - maybe for the last time. I will notify my doc here in Cooma NSW and see if she can offer any hope and see if she can do anything to intervene - but she first made an Urgent Request for me to see the Pain Specialist and it will probably be over the 12 month period before I can get in to see the specialist .... Isn't it Great to Be Alive !!!
So, I do wish you well with the Mex and so glad it is working positively for you -
Can you get tegratol this is used for EM takes the nerve pain away .
Good luck keep tring we have to be our doctors and keep pushing the doctors we actually know the most surround your self with family and friends let them know how you feel talk to someone don’t loose hope take care
I had genetic testing via the Xenon study and was told no mutation in the primary gene associated with EM. Despite that mexiletine has worked for me. As with many disorders I'd say there are still other mutations yet to be identified.
brenda80 said:
Does someone know if its helpfull in secondary and primary?
I have read more helpfull in primary.....
I want to give it a try too when I see my new doctor.
So, its been 45 days since I began mexiletine and i'm still doing relatively well. My sleep is good. Any flaring remains sporadic and substantially reduced. Its made a big difference.
One thing that was disappointing is that exercise still invoked a flare. I tried running one night and it didn't hold for that. Afterwards, my knees got red and warm for a brief period. While easily controllable, the activity seemed to make overall symptoms modestly worse for 7 to 10 days after. Perhaps a morning attempt would be better tolerated?
I'd like to see if my doctor could pull something out of his hat that would allow me to resume regular cardiovascular exercise. I'd also like a more firm diagnosis. He has, thus far, equivocated when pressed.
I have a follow-up appointment next week...
Frostbite, I hope you've been able to work through the bureaucratic obstacles standing in your way. Don't give up.
Brenda80…it’s working for me and I don’t have family history or mutation associated with primary. Carterdk: can you do low impact exercise? I do a lot of recumbent bike at the gym or just outdoor biking, but running aggravates the neuropathy in my feet for a week after. exercise keeps me feeling much better.
Hi carterdk - I've been reading with great interest the discussions between you and bootcamper and others who are trying to figure out how to make workouts more tolerable. Can you tell me if Mexiletine has affected your heart or endurance during exercise? I have been dealing with EM for 2 years now and have not taken any prescription medication for it yet. Your success with Mexiletine has finally got me to at least consider doing something other than cooling/elevation as needed. I have been very hesitant to get on prescription drugs which might bring upon undesirable side effects. Except for EM, I am very healthy. Also, thank you for summarizing the new drugs which are being studied by the various pharmaceutical companies. Have you heard how many years it might be before we learn of their efficacy?
Whether Mexiletine has affected my heart or endurance is difficult to gauge. My endurance is lower than it used to be, but it's hard to say why. I was sedentary for most of 2015, which obviously had a negative impact on my VO2max (maximal oxygen consumption). I also lost muscle mass. Since I've start back, my endurance has gotten better. It remains pretty far off where it used to be, however. I also take Propranolol, which is known to create an abnormal heart rate response to exercise. It depresses heart rate. All that said, I did specifically ask my doctor whether Mexiletine or Propranolol could be negatively affecting my endurance and he said no. A lower maximal heart rate during exercise I think would definitely affect performance. Time will tell whether my endurance returns. I'd like to be able to run a little faster, but that is a minor concern. I'm just happy I can do it again.
As for when we will learn efficacy for the drugs being researched, a number of them are in Phase IIb testing now. That's for efficacy. Three of them were given brand names recently, which would seem to indicate a desire to bring them to market at some point. I don't have any other information.
Sounds like a good idea. If you do end up taking Mexiletine, remember to take it with food. It gives me heartburn if taken without. I had never had heartburn before, so didn't recognize what that was initially. I take Mexiletine 3 times a day, so pretty much just take it with my meals and try to space them accordingly.
Hi again Carter - I have an appointment with my doctor this week so that I can ask about Mexiletine. Is it still working well for you?
To any other folks also on Mexiletine - are you having continued success? I want to go to my appointment armed with as much positive feedback as possible. :)
I believe I am getting some relief. It hasn’t completely stopped the flares, but the flares are less painful, easier to get rid of and I even have a few flare free days every now and then. I take 200mg three times a day. Like Carter, I highly recommend you take with food. Wishing you the best of luck! I’ve never been on any kind of medication (my entire life), so this has been a very new experience. Let us know if you have any other questions! Grateful to have this resource to bounce things off one another!
Yes, I am still on Mexiletine. I've taken it for 9 months now. It remains very effective for my erythromelalgia. I don't get flares. I still have some more minor symptoms. Beginning in February the Mexiletine began to cause heartburn, which I didn't have before. My general practitioner prescribed Zantac. That seemed to help somewhat. Eating smaller meals multiple times a day, making healthier choices, and not eating large meals before bed helps more. I also have cut the Mexiletine to 150mg twice a day, rather than 3 times a day. I do just as well at twice a day as I do at 3 times a day and it's easier to manage. That was something my doctor and I had discussed doing last year, but didn't implement until recently. The acid reflux is something that needs to be controlled, so any further adjustments will be made as needed.