Hello everyone…I was wondering if anyone elses EM has spread. I’ve had EM (primary) in both my feet for almost 3 years. I’ve noticed it has been slowly crawling up my ankles to mid calves. The burning red swollen pain has also gotten worse. I’m almost tempted to get a wheelchair for the times I need to go out of the house. I’m just absolutely miserable. My compound medicines work half of the time. Is there any hope for us?
There’s always hope.
When things looked bleakest for me, I once confided in my mom I didn’t want to get out of bed in the morning, that I felt like I wanted to quit. She pointed out we all have an obligation to others to get up each day and carry on. You press forward even when things look bad and don’t want to. Quitting is not an option and hopelessness isn’t either.
You must persevere.
Howard Schultz, the billionaire founder of Starbucks, was turned down by 217 banks when trying to secure a loan to start his coffee business. Imagine being rejected 200 times and still getting up for the 201st pitch, the 202nd pitch, the 203rd pitch…
I see you’ve tried a lot of medications and to not find relief after all that effort must certainly be frustrating. But you have to keep trying treatments because the next one could always be the one.
You know what that’s called?
Thank you Erirdc…I try to stay positive. I got some bad news yesterday. My compound pharmacist is no longer making compound medicine due to the government cracking down on the FDA and compounding. So now I’m back to square one trying to find relief. I mentioned the Mexi?? medicine and Lidocane infusion and he said absolutely not…hmmmm. Any suggestions?
Don’t take “no” for an answer? Perhaps there is a credible reason why mexiletine is contraindicated in your case, but you should always make your doctor elucidate their reasoning. Then if you feel the decision is incorrect, you can open the debate and make a counterargument. But don’t just ask, get told no, and let that be the end of the discussion. What was his reasoning?
Also, the one time I tried a compounded cream, I had it shipped. My doctor called in the prescription to a compounding pharmacy in California and they shipped it to me (I live in a suburb of Washington, DC). The company I used was Leiter’s Compounding Pharmacy. I imagine there has to be at least one compounding pharmacy in the United States that could ship the prescription to you, don’t you think?
Thank you CarterDK for your quick response. His answer while scrolling through his phone reading about it, was that it would cause serious heart issues like erythmeia and even heart attack. He is always caustious to what he prescribes me cause I was once in renal failure and my liver has damage.
I live in a small town too but in Montana. My compound pharmacist said that the ketamin is very expensive like over $100 for 1 month. I will definitely see into the compound company you use. Thank you so much for that info. I always like to read what you say even in other people’s topics. You seem to know a lot about this disease. Thanks again for giving me hope.
The blackbox warning for mexiletine is based on the CAST study (Cardiac Arrhythmia Suppression Trial), a randomized double-blind study in patients with asymptomatic non-life-threatening ventricular arrhythmias that demonstrated an excessive rate of mortality or non-fatal cardiac arrest in patients treated with encainide or flecainide, class I antiarrhythmics. The enrolled patients had a history of myocardial infarction (more than 6 days but less than 2 years) and the average duration of antiarrhythmic therapy was 10 months. The applicability of the CAST results to other populations (e.g., those without recent myocardial infarction) or other antiarrhythmics is uncertain.
To summarize: encainide and flecainide were found to have proarrhythmic properties in patients with preexisting arrhythmias and a recent heart attack. There is no evidence the study results extend to the broader population without those characteristics or other class I antiarrhythmics like mexiletine. However, the CAST trial is what the blackbox warning on mexiletine is based upon.
But see, here is the problem for you:
Rare instances of hepatotoxicity, including hepatic necrosis, have occurred in association with mexiletine treatment. In postmarketing experience, abnormal liver function tests have been reported, some in the first few weeks of mexiletine therapy.
That’s why you probably shouldn’t take it, if you’ve previously had renal failure and have a damaged liver.
Just fyi Arz, I don’t get on well with mexiletine myself (side effects). I had written my pain doc about the possibility of other oral sodium channel blockers and he wrote back “There are a number of them we can try for example topamax, carbamazepine, oxcarbazepine, and more.” In case that helps. I have also talked to him about lidocaine iv’s. In my experience lidocaine iv was the most powerful out of everything I tried – even though it was temporary, it gave me hope that the pain cycle could be broken … one day.
In the meantime I hope today is one you can manage <3
Thank you si much for your input and information. I will definitely be talking to my dr about the lidiocane iv. Until then like carterdk said “we need to keep on hoping cuz without hope, we have nothing”.
Thank you for all your information on the mexiletine. Maybe by just having the lidocaine iv would be just as helpful.
Here are some papers on inpatient continuous lidocaine iv -
I also feel like these articles are almost the definition of hope. The first one - he started using cocaine + other substances to try to get rid of his pain and had to detox. It is painful for me to just look at his feet before treatment. The second one - an 11 yr old, getting life-changing results with a 45 day lidocaine infusion.
I had an outpatient iv to test the waters, and am currently fighting (insurance) for an inpatient 5 day (continuous) one.
I am told that lidocaine is not only a sodium channel blocker – but also is anti-inflammatory and modulates NMDA receptors and they don’t know what else exactly. The facebook group on EM might have more info on this treatment and providers in US/Canada that have previously done this treatment.
I cannot watch the last link without tears.