Tomorrow I begin Mexiletine. I have been working with a dermatologist in Dublin who has been open to helping me with my EM. So far we have tried an antihistamine, aspirin and amitriptyline.
Because of lockdowns, I have waited a few months to finally begin Mexiletine, I am hopeful but slightly nervous.
I would appreciate any advice!
Always take it with a meal. I didn’t initially and that was OK at first. Then after a couple months I started to have heartburn, something I had never experienced before. It definitely needs to be taken with food. Good luck!
Thank you! How long did it take for you to notice a difference with your EM from it?
OK, so I responded exceptionally well, better than anyone else I’ve read about on here. I was spontaneously flaring multiple times a day, every few hours. I had my last spontaneous flare about 12-36 hours after I took my first dose of mexiletine. After the second day the spontaneous flaring completely stopped. I could still provoke a flare with exercise for some time after, but that eventually stopped too.
About the opposite of @CarterDK here haha but I noticed a gradual improvement after a few weeks which continued for 6 months or so until my EM just about completely resolved. Make sure to give it a good trial, give it time, test your boundaries with it, it is one of the potentially most helpful medications you can try for EM as a young individual. It could be like a switch like it was for Erik or a more gradual progression like it did for me.
I did well with it. Start low go up slow
Hi, that’s great news for you, have been reading up on this medication, can I ask a couple of questions please…
Is your EM primary/idiopathic
Where do you have EM
Have you tried many other meds
Ive had loads of tests,bloods ect, all negative, I’ve tried many, many different meds including iloprost infusion, nothing has worked, want to mention Mexiletine to my rheumatologist, who has absolutely no idea about this disease
Thanks in advance
Hi,
I will do my best to answer those.
Firstly whether it is primary or idiopathic, I am actually still not 100% sure, like you I have had many different tests, blood and urine, and negative. I also tried aspirin which generally works if it is secondary to a myeloproliferative disorder, and nothing.
So my Em initially began about two years ago in my hands. Now I have EM in my hands, feet, ears and sometime face.
I have tried aspirin, an antihistamine and amitriptyline.
As regards mexiletine, so I actually had to bring it up with my dermatologist, she had heard of EM, but I think she very much wanted to try some different medications before considering Mexiletine, but I did push her a bit towards it after I tried amitriptyline, it is very hit and miss but seemed the most promising.
*I actually only took my first dose this morning (100m, which I will take three times a day). My pharmacy had to order it in as it is unlicensed in Ireland. I have a very good pharmacist, but he did want to discuss the medication and reasons behind why I was prescribed it (as it is not commonly uses).
My advice would be to bring it up with him/her and send them all the studies, this for example
I will update everyone in a few weeks how I am finding it!
Those are the only meds that have helped me. It never goes completely away but I am definitely much better. It takes a couple months to reach maximum relief.
Mexiletine is the only medication that has helped me at all. I tried every other medication that would normally help. Even Dr. Davis at the Mayo Clinic said they couldn’t recommend anything else. I found a pain management doctor that recommended it. He wanted my general practitioner to prescribe it so I could be monitored. I’ve had several EKG’s at his request and mexiletine blood levels taken by my general practitioner.
Take it with a full meal. If I don’t I get stomach pain and heartburn. I take 300mg twice a day. I was taking 300mg three times a day but the side effects were bad, so it was reduced. I experience mild tinnitus, which was worse at the higher dose.
Hope it helps you!!
Hi Anthony,
Just out of curiosity, did you get any benefit from amitriptyline at all?
Best of luck with Mexiletine.
Hi Joe,
That is great that you had such an improvement. You say you had gradual improvement, at what point did you feel that mexiletine was actually making a difference, was it within the first few days or did you not feel any change until a few weeks?
Thanks for the response. Could you give me any more info? How long did it take you to notice a difference with mexiletine and how much of an impact did it make on your EM?
I am glad you found some relief. How long did it take for you to start noticing the effects of mexiletine on your EM?
Hi Jewels,
Thanks for the info. I take 100m three times daily with meals, no major side effects so far.
I have been asking everyone the same thing as I am just not sure what to expect from this, but, how long did it take for you to notice that mexiletine was helping your EM? Was it an immediate thing or did it take time?
Hi,
Honestly, I did not take amitriptyline long enough to get any major benefit, only took it for one week.
I did not like the side effects, it made me drowsy and sluggish. At that point I knew I wanted to try mexiletine, I just took it for a week to comply with my dermatologist. If mexiletine does not offer any better it could be an option for the future.
Everyone will be different. I did not notice any crazy improvement. It was so gradual that I hardly noticed it until a few months later I noticed that I wasn’t having any flare ups. If you find yourself slowly not thinking about your EM as much, it is likely that it is working. I was also trying a few other different treatments at the time but was able to isolate the mexiletine as helpful when I tried to stop taking it and noticed an increase in symptoms.
Hi Joe thanks for the reply.
Sure I completely understand that everyone is different, it is just nice to hear people’s stories. It’s nice to hear that yours was gradual, at least I know that even if I don’t say some crazy improvement in the first week does not mean it won’t work for me.
As regards thinking about EM, the pandemic I think has been a doubled edged sword, on the one hand it’s actually been good that I now have the time to focus on my EM and being at home means it doesn’t effect my life as much, but on the other hand I obviously have more time to think about it, so it plays on my mind more.
I know I need to just try focus on my college work etc over the next three months and just leave the medication do it’s thing without thinking about it too much.
Hello again, I don’t remember exactly how long before I noticed a difference. I think it was within 2 weeks. For me this med helped with the pain and swelling but didn’t eliminate the pain. I have a severe case. I really can’t go out much because I live in San Diego County Inland and it’s just too warm and sunny for me most of the time.
Hi,
That is very tough, but at least it offered some relief. I wouldn’t consider my case severe but it is definitely worse than most I see here by the fact that its hands, feet and face, and it’s been fairly progressive. However, I do live in Ireland, that does help. Spring is probably the best time of the year, not hot but not cold (which can be bad as going from cold outdoors to warm buildings).
I will keep everyone updated after a few weeks.