Hi guys, so I am a 23 year old guy who started developing EM over a year ago (it begun with flare ups in my hands, it has now progressed to my feet, face, ears etc. I have just become generally intolerant of heat and exercise, which makes me hot, itchy and uncomfortable). I swim to keep fit etc. Anyway, I discovered EM in around January and it was a eureka moment. I eventually went to a dermatologist in May as regards my adult acne, I am now on accutane which is working wonders. I mentioned EM, we tried an antihistamine for two months followed by aspirin, very little relief. I do find Magnesium helps. Although she is a top class profesional, the best in Ireland as regards dermatology, our meetings are always brief. I have emailed her with concerns over my EM, she does not want to try anything new whilst on accutane, but she said afterwards we will try amitryptilline. I am happy she is open to options, but honestly, I was hoping we would start with mexilitine (I have no other health disorders and all the research by Stephen Waxman etc seems to make the connection between nav1.7 sodium channel and primary EM, thus a sodium channel blocker seems to offer the most opportunity). What do you guys think? Have any of you tried amitryptilline? Should I bring up Mexiletine? (I would feel like I would be impeding on her “expertise”) I am going to be working with this dermatologist over the next 4 months as I finish my accutane course and I was hoping to continue with her for post acne care. I am not sure if I should go get a second opinion or if I should just wait it out? Obviously I am very young, I am just finished college and EM is really limiting my options, I want to be proactive and try find a solution. Thanks for your replies in advance!
Hi Anthony, I’m so glad you had that eureka moment, not glad of course that you have EM but glad you now know where to look for treatment. I’m 41, had EM from birth but didn’t get a diagnosis until I was 16. I’m lucky enough to be under a rheumatology team at the Royal Free and neurologist Prof Dave Bennett at the John Radcliffe. I was on amytriptyline for many years with great success. I switched to another SSRI, imipramine a few years ago because of the dry eyes and dry mouth side effect. I still get that!! I also take pregabalin which has made a huge difference but again the side effects are a frustrating. Pregabalin has helped enormously but it also makes me spaced out and forgetful so I’ve had to play around with the dose to try and find the right balance to give me relief from my symptoms without becoming a total airhead! Good luck, look after yourself.
That is great that you are working with world experts, I have read some of Dave Bennetts research. I am working with Prof Catriona Ryan of the Institute of Dermatologists in Dublin. Yes, well because I am so young, I wanted to be as proactive as possible, I have accepted that this may be something I deal with throughout my life but I want to try find some sort of treatment. That must have been tough having it so young, I was blessed with fantastic health for my first 20 years.
I am happy to hear you have found some relief. How much relief did amytriptyline offer, could you live a normal/semi-normal life under it? Exercise etc? Also Can I ask if you ever tried a sodium channel blocker such as mexilitene? It seems that all the modern research (especially that of Stephen Waxman at Yale) seems to point to the link between the sodium channel nav1.7 and EM, and that a more specific sodium channel offers the most hope for those especially with primary EM (thus a general blocker such as mexilitene seems like a potential treatment).
Thanks for your reply, hope to hear from you soon
A compounded gel of amitriptyline and ketamine is prescribed by the Mayo Clinic for erythromelalgia. I can’t remember ever reading of amitriptyline being used as a systemic agent for EM. Because you experience symptoms in a wide number of locations topical applications may be impractical. I take mexiletine and it was the first option suggested by my doctor, an anesthesiologist who specializes in pain disorders.
Just FYI, the reason amitriptyline may be effective for EM is because it acts as a sodium channel blocker:
Amitriptyline inhibits sodium channels, L type calcium channels, and Kv1.1, Kv7.2, and Kv7.3 voltage-gated potassium channels, and therefore acts as a sodium, calcium, and potassium channel blocker as well.
Below I have attached a recent overview of treatments for EM. Amitriptyline is mentioned but it does not seem like the obvious choice. I would be more interested in trying mexiletine first due to its potential of major relief which has been seen in many patients. Any advice about how I should go about bringing this up with my dermatologists, she claims to be well aware of all the treatment options for EM, so Id like to bring it up in a way that is not undermining her.
Tham-Current-pain-management…a-critical-review.pdf (387.8 KB)
So, I think the easiest way to go about asking that in a non-confrontational way would be to simply ask your doctor to explain her reasoning.
For instance, “what is your reasoning for trying amitriptyline as the next treatment option?” or “what is your reasoning for trying amitriptyline rather than the sodium channel blocker mexiletine?”
With that approach, you are not undermining her but asking her to demonstrate her expertise. Presumably your doctor has a rational argument for why amitriptyline should be the next treatment option. It is within your right as patient to ask how she came to a specific decision. Asking these types of questions is always a good idea because you want a doctor to be able to demonstrate knowledge. If you’re unsatisfied with her answers, I would seek a second opinion.
I took Amitriptyline for many years and it did help my EM. Take it at night as it’s sedating. Normally 10-20mg. I had to quit as it caused urinary retention. You asked about Mexilitine and now I take that and Lyrica. Both help me but out of the 2 Mexilitine has helped the most. Maybe you can get them to start you on a low dose. Say 100mg 2x a day. Even that start slowly and work up. Eventually most settle around 150mg 3x a day which is still less than a heart patient. I’ve found a combo of Lyrica and Mex works the best for me and I live a semi-normal live. If I exercise or get out in hear I will flare, but I don’t normally flare at home until late evening. I still do stuff knowing I’ll flare but I can normally get them under control in an hour or so.
Sorry, just one more question, I really appreciate the feedback. How did you find mexiletine compared to amitriptyline for your EM? Were the effects similar? What did you tolerate better as regards side effects etc? One take that I do take is Magnesium which seems to help the evening sedentary flares. I get flares in the heat but I used to get them a lot just studying in the evening, magnesium has seemed to prevent them or at least make them a lot more mild.
Mex has worked the best of everything I have tried and it’s not close. Lyrica next and Amitriptyline 3rd. But they all have helped. I don’t tend to get side effects so only one I had side effects on was Amitryptiline with urinary retention which is a common side effect. I got where I could barely pee.