Go slow, I am now 200 mg x 3/day
Can you give me some more details on your experience with it?
See my latest posts. Greetings.
Hi Anthony,
Hope all is well, how are things going with Mexiletine thus far?
Hi Guys,
Just wanted to give everyone an update and ask for some advice. So I have been taking Mexiletine for about five weeks now. I take 100mg 3 times a day. I have had little to no side effects, when I first started it I needed to take it with a big meal otherwise I would get a bit of heartburn, however nowadays I could take it with just a banana and feel nothing.
Is it working? I am not too sure. So I have not seen any dramatic change like others have seen here. I think I am getting less flare ups when I am not active (like sitting in my chair on my laptop, especially in the evening). But I still get flare ups when I do activity (out walking my dog). Again, I am not really sure, I may be just convincing myself that itâs working.
I meet my dermatologist next week (after our six week trial). I think the plan was to try up the dose after 6 weeks. So I am going to ask to be put up to 150mg three times a day and see how that goes for another six weeks. If after that I see no change, I suppose I will just have to accept that itâs not working.
I am really not sure where to go next if it doesnât work. Like I am young and apart from EM my health is good (I was an international athlete in my teens, donât smoke or drink, seem to have no underlying conditions). The paper I have attached below is what I have been basing my treatment off. So far I have tried aspirin and an anti-histamine, I was on amitriptyline for only a few days (didnât really like the side effects and at that point had convinced myself mexiletine was the answer).
I really thought mexiletine would work, does anyone have any suggestions of what I should try next if I donât see results after upping my dose and trying for another six weeks? Appreciate the help.
Hi Anthony,
Figure Carter and JoeShmoe will give you their opinions/experience on Mexiletine, hereâs some other research that may help narrow things down.
On the topic of Mexiletine/Lidocaine, hereâs an interesting case:
- Ryan tested positive for the SCN9A mutation, started mexiletine with no benefit (for months) then received a lidocaine infusion and subsequently placed back on mexiletine and is now pain free.
- Ryanâs father tested negative for SCN9A mutation and found relief with the same Lidocaine Infusion â Mexiletine treatment.
https://myforum24.online/i-have-heard-this-has-helped-getting-doors-opened-for-continuous
https://myforum24.online/for-those-of-you-who-may-want-to-share-my-sons-story-with-your
Topical Treatments
Seems Mayoâs standard treatment is a compounded cream consisting of amitriptyline 2%, ketamine 0.5% and they sometimes add one of the following where needed: gabapentin 5%, lidocaine 5% or clonidine 0.2%.
I may consider this option next as my podiatrist recently prescribed me a calcium channel blocker compounded cream for Raynaudâs, if this goes nowhere Iâm going to bring this up to her next.
âAt Mayo weâve adopted a starting base combination of amitriptyline 2%, ketamine 0.5% in Lipoderm. We do, at times, add into that one of the following: gabapentin 5%, lidocaine 5% or clonidine 0.2%, depending on what the prescribers wish,â Warndahl says. (Note: This cream has to be prescribed by a doctor and prepared in a compounding pharmacy where pharmacists mix the ingredients by hand.) The original EM pain-relieving, oil-based gel was developed for EM at Mayo under the direction of Mark Davis, M.D., and Paola Sandroni, M.D. Dr. Davis says he prescribes the cream for his EM patients. If the pain-relieving effect is not strong enough, he may increase the ketamine up to 5%. Prescribing physicians have to specify the drugs and the base of the cream for the compounding pharmacy. Any compounding pharmacy in the patientâs region can fill the prescription.â
Other than the 2 points above Iâd say keep chipping away with that cumulative review paper, trying the lowest risk options first.
Hi,
Thanks very much for all the information, really interesting.
I have seen the research on lidocaine infusions but I had presumed that those who had success with lidocaine would have success with mexiletine, but that case with Ryan is very interesting. Lidocaine infusions seem quiet serious and I wouldnât even know how to go about getting one.
As regards the cream from Mayo clinic, it also looks very interesting. However, I am in Ireland so again I would not even know about how to get access to it.
As I mentioned I will meet my dermatologist next week, I think our original plan was to up the dose after six weeks, so I will give mexiletine another six weeks. I agree with chipping away at the cumulative review paper, but I just donât know what to try next. Again I had believed that mexiletine was probably going to be the most succesful. If a lidocaine infusion would work I am afraid of spending another year trying different medications that donât work. Let me know how the calcium channel blocker compounded cream goes for you!
If you require a poly pharmacy approach, in which you need to trial multiple different medications, youâd be best off seeing a doctor who has experience treating EM. The dermatologist youâre seeing has an impressive resume. Have you asked her directly if she has treated EM patients before?
Hi Carter, yes she has mentioned that she has seen patients with EM before when she was working stateside in Texas but Iâm not sure about her experience actually treating, it was me who suggested mexiletine and she just agreed.
Honestly, she doesnât communicate a whole lot, I know sheâs very professional but our meetings are quite short. I will have to see what she says next week. Iâm not really sure what to say to her, that mexiletine isnât giving me much relief? Feel a bit lost with it all at the moment to be honest.
âIâm not really sure what to say to her, that mexiletine isnât giving me much relief? Feel a bit lost with it all at the moment to be honest.â
Tell her this. And make sure that you get your moneyâs worth with her time. Itâs okay to feel lost, that is what your doctor is there for. I know mexiletine does help me but I too had a similar experience thinking that high dose steroids were the answer to my EM. They werenât and made me worse. It took a lot of trial and error to find things that helped and in the end it was a poly pharmacy approach like Erik mentioned. EM is complex and hard to treat for a reason, it is often multifaceted and requires a few different therapies to synergize properly for proper relief. Mexiletine isnât even the most helpful thing I tried actually. The order of what helped me was capsaicin cream > feverfew > mexiletine > cyproheptadine > beta-blocker. Everyone is different, donât give up after one treatment.
Hi Joe,
Thanks for this. I completely understand. I think I may mention the capsaicin cream to her.
Also as regards mexiletine, I know you mentioned that it was a slow process for you, do you think itâs worth upping my dose to 150mg three times daily for another six weeks even though I havenât seen any significant changes so far?
Not communicating is a problem. Communication is the bedrock of any doctor-patient relationship.
I would be forthright with her mexiletine hasnât produced desired results. Then, Iâd pointedly ask herâ What are the next steps you propose we take? Whatâs your treatment plan for me?
You want her to demonstrate knowledge. More importantly, you want her to have a plan. If she canât communicate a clear path forward, she might not be the right doctor to treat your erythromelalgia.
I completely agree.
I am going to email her a few days before our appointment and just express some of my thoughts and ask her for hers (which she can give me in our appointment).
So I am thinking that I would like to try mexiletine for another 6 weeks at a higher dose just to give it time. On top of that Iâm going to express my interest in also adding a topical agent, those mentioned in the review are amitr iptyline-ketamine, lidocaine, Midodrine and capsaicin.
I will ask her for her thoughts on this and her suggestions as regards future treatment.
Does this seem okay Carter?
E-mailing her in advance to ask about next steps is a good idea. That will allow her time to formulate a treatment plan. At this point, I would withhold expressing any direct preferences yourself. You donât want to practice medicine on yourself. You need an experienced doctor with their own ideas. Give her a chance to lead.
Hi Carter,
Yes I completely understand. I think when youâve gone through so many doctors before that havenât had understanding or have brushed you off, you start feeling the need to practice medicine on yourself.
But I agree, I need to find out her knowledge and ideas. I will just email her about my lack of success with mexiletine and ask her to discuss with me in our appointment her plan for treatment.
I speak from experience. I, more or less, practiced medicine on myself initially, having doctors with little knowledge of EM, who were eager to get me out of their office, sign off on my treatment ideas. I knew I eventually found the right doctor when one could speak back to me on EM with a level of detail I couldnât acquire simply from reading the internet. He was the only one who, when I tossed out ideas, saidâ âno, this is what I want to do first.â He had ideas of his own, conducted a differential diagnosis to confirm or disprove I had EM, and set out a treatment plan. That is what you need.
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Hi Anthony,
Just in case you decide to find another doctor, I came across this one for Ireland on the erythromelalgia association physician directory. (https://erythromelalgia.org/resources/physician-directory/)
Dr. Martin Steinhoff
Dermatologist
Charles Inst of Dermatology,Univ College of Dublin Belfield, Dublin, IE, 4, Ireland
You can also email erythromelalgiawarriors@gmail.com for their list, perhaps there will be more options.
Lastly, not sure if you ever travel to London, perhaps this doctor also does televisits now due to covid but site member MNP said the following on his EM blog:
âI was re-diagnosed with Erythromelalgia in 2012 after seeing many specialists in and around the UK,
finally seeing the right doctor at Kingâs College Hospital London (Dr Robert Hadden).â
Hi everyone,
Just wanted to update you all. I had an appointment with my dermatologist yesterday. I took all your advice and did not make any suggestions to her, just let her lead the way.
So this is her plan: firstly, she wants to give mexiletine more time. She has increased my dose to 200mg three times daily and wants me to take it for two more months. If after two months we then see no improvement, she has suggested we try a combination topical lidocaine with a topical capsaican.
For future treatment options she mentioned either lyrica or amitriptyline. I took amitriptyline before very briefly (like a week and a half) with another doctor, and did not like the side effects (which I told her so I think she would prefer to try all other options first).
I have actually realised that being more patient and understanding with her resulted in her being more patient and understanding with me. She understands that treating EM is very trial and error. She has an overall plan, but she views it as very important that we give all treatments time, and not rush from one thing to the next. I know for many of us, we want relief as fast as possible, but I understand her, best to check the boxes off fully.
I will update you guys in a couple of weeks on how the increased dose is going. I am not sure what to expect with the new dose as regards relief/side effects. Would be happy to hear any advice you guys have!
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