Not so good about the reflux but seems to me that for most people with chronic conditions there is nearly always a compromise somewhere along the treatment journey. I had the same reflux issue with sulfasalazine, something I found helped at night (as well as not eating after 6pm) was raising the height of the head of my bed by about 4 - 6 inches ... we stood the legs on two small stacked concrete slabs. For me it was only short term as I stopped the ssz but I hope you find the best way forward for you.
I am concerned about the reflux, but hopeful I'll be able to control it primarily through lifestyle modification. If that doesn't work, I plan to discuss with my doctor the feasibility of intravenous lidocaine as a supplemental alternative to a reduced dosage of mexiletine. Mexiletine is structurally similar to lidocaine, but orally active. Since I am responsive to mexiletine, there is probably a good chance i'd respond to lidocaine.
Hi I am glad you are doing well carterdk I tried mexiletine just for a short time did make me feel sick but with food that may help I want to try again I was given 200 ml when did you see a change how long ? And what dose ? I have seen someone who was really bad was given intravenously lidocaine and mexiletine he had an amazing result . I seem to get worse each year I have nerve pain in toe nails and fingers and burning al over the body at night have to go to bed with cold packs so can sleep . Taking gab lyrics oxycodone . Can not walk very far without flaring feet hands ears knees . Nice to see you are doing relatively well .good luck
I responded immediately to Mexiletine. The first week I was taking just one 150mg capsule per day. I noticed an immediate difference within 24 hours. In the 2nd week I increased to 300mg per day (150mg, twice a day) and in the 3rd week I increased to 450 mg per day (150mg, three times a day). However, most of my improvement came from just the once a day dose. Right now I am taking 300mg per day.
Oooooooooo Carter! Yesterday I took my 1st dose of mexiletine. Had a lidocaine IV on Weds. This is Fri and this morning I am a NORMAL person! A flare could come at any time but I’m enjoying right now. I cut a 150mg cap in half, but after reading your note, I won’t be so afraid of it. Thank you!
How are you doing now, Satochan? I clicked through from another message and saw one more recent that didn’t seem as positive. Sorry for the terribly slow response. I haven’t been as active on the board recently because I’ve been uncommonly busy with business.
There is also the fact my disease progression seems markedly different from most others. I feel a bit guilty having such relentless positive developments when I know so many others here are struggling. After over a year and a half, I can say with relative certainty I’m getting better. I’m better now than I was a year ago when I first started this thread. I was better when I started this thread than I was 6 months prior to that. This summer I’ve worked clearing out a searing hot garage on days when the temperature was near 100. I’ve moved furniture outside when its been in the 90’s. I can do these things without incident. I’ve made substantial progress again by simply stopping all ice applications. Of course, it’s unlikely I’d have been able to stop ice applications without baseline improvement.
The overall arc has been like a tide slowly receding. The list of situations and circumstances that cause even minor issues is dwindling. Undoubtedly I wouldn’t be doing as well without the medication. However, I’m cautiously optimistic my EM will someday resolve entirely. I feel a bit guilty saying that too loudly here.
I don’t think anybody will mind you saying how much better you are carterdk. In fact it gives the rest of us hope as some people say there is no cure for EM. Whilst you might not be cured getting relief is a big thing.
Hi Carter,
I was just thinking about you. Was doing a little Mexilitine research and there you were! Don’t ever feel guilty about doing better. I’m thrilled and I know our fellow burners are too. it really gives us hope that maybe we will too! Carter, since there’s no info for Mexilitine doseage for EM, would you mind telling me yours? I’m taking 75mg 3X a day and have plans to titrate up. My last lidocaine IV hasn’t worked like the first. Drat and egads! Thought I had FINALLY found a partial solution. So glad to see from your note that you’ve been able to be hard at work.
Have a COOL evening and a COOLER tomorrow. Sincerely, Patricia aka Satochan
I take 150mg three times daily. Most of my improvement was apparent at the once a day dosage, which I only took for a week in August 2015. I don’t seem to have any major disruptions if I miss a dose. I do find it difficult to take the medication three times daily at even intervals, especially since I must take it with food. For a few weeks I took the medication just twice a day because of stomach upset. The lower dose didn’t make a big difference, but it might not have been as effective as three a day. I decided to go back to three times daily because my stomach had settled.
I do wish it would be cooler. Not so much because the heat has been bothersome to my EM lately, but because the heat has just been so oppressive. We’ve had 45 days in July and August with high temperatures at 90+ degrees. When it hasn’t hit 90, its been 88 or 89. We haven’t had a cool day in months! There is also the humidity, which has sent the heat index over 100 most days. I believe they said it’s the hottest summer on record here in DC.
Hi Carter, it’s just gotten cool in the mornings here in TX so I been taking my dog, Marcy, for a walk. I was thinking, bears hibernate in the winter and we have to hibernate in the summer. I’m up to 150mg of mex 3X a day. I "think’ the burning is less, but that may be wishful thinking. I had a lidocaine IV on Tuesday but am not feeling any effects yet. Have titrated the Lyrica to 75mg 3X a day. Am planning to start the titration process next week to 100mg one of those times. I really hope you are doing well. Stay cool,man. Patricia
Thanks for the well wishes. Yes, I am doing reasonably well. The seasonal change hasn’t affected me too much. I’ve started to think, at least with medication, that I do slightly better in warmer weather. If my core is cold that sometimes creates a problem. But i’d say sharp temperature changes from cold to hot, rather than just consistently warm temps, are more an issue.
I’ve had this now for 2 years and it’s still difficult for me to draw definitive conclusions. My symptoms first began in winter (January/February) during what was the coldest weeks of the year (after the polar vortex had descended south). Rather than burning, my knees now are most often ice cold. It’s when they warm up that is the problem.
It’s a bit of a chicken or egg situation. Is heat alone the cause of the burning and redness or does the problem arise from the area being cold and then rapidly warming? I can’t tell. I definitely prefer it when the area is cold. These are probably the type of things I should discuss with a doctor, but I haven’t had an appointment now in over a year.
All I know is that Mexiletine suppresses the redness and burning. I wish it worked as well for everyone as it does for me.
Hey Carter, I’m up to 150mg 3X a day. Thank you so much for the info. I’m taking Lyrica 75mg 3X a day and will soon titrate up to 100mg. Wish me luck. BTW, have you had genetic testing through 23andme? If you do, one of the EM genes is SCN9A, (I’m a mutant on that strand of DNA. One of our fellow burners said an anomoly can be on SCN10 and SCN11. I was normal on both of those. It is sooooo fascinating! I’m a science geek. P
I’ve not had any genetic testing. My insurer will do it if I ask for it. I hope the extra Lyrica provides some relief for you.
Btw, I also take 60mg of extended release propranolol per day.
My bigger problem right now is the original injury in my left knee that preceded the Erythromelalgia like symptoms. It is my primary limiting factor. I’m resuming physical therapy for that on Monday. If not for that, I would be able to run and be fully active. The symptoms i’ve associated with EM are still annoying at times, but have not been painful since I began taking Mexiletine. The patellofemoral pain should respond reasonably well to physical therapy.
Very excited to hear how well Mexiletine worked for you. I just saw a physiatrist who has treated 2 other patients with EM, and he suggested I try it. He wants me to keep a journal for a week or so and then begin taking 150mg twice a day.
Take it with food. I take it now with both milk and food. At first it didn’t bother my stomach and I could take it alone. Now if I take it alone I get heartburn. If I take it with food and a glass of milk, then it’s fine. It has also reduced my tolerance of spicy foods.
It seemed to cause more flaring and made me break out in a light rash. Bummer…