My dermatologist has told me she will prescribe a compounding gel for me if I can find one that works for quite a few of you. For me, when putting anything on my feet, it has to be very light weight. No ointments, creams, or thick gels. Do any of you have any suggestions? Thank you!
I’m sorry I don’t. I’ve tried creams with lidocaine but this didn’t help at all. If you find one that does please let us know. Thank you.
Hi Patti,
Thanks for posting your question :). Several compound creams are prescribed for EM - lidocaine - lidocaine with ketamine - lidocaine with amitriptyline. and lidocaine with added gabapentin or clonidine . There are several different combinations but these tend to be the most common. Whilst some EM'ers do find some relief from the transdermal type treatments, others find them ineffective or hard to tolerate. Personally, I have found the lidocaine type compounds quite lightweight and bearable, but sadly they have never helped much. I think their effectiveness rather depends on severity of flaring and whether its localised rather than diffuse. Aside gels/creams you have other transdermal methods such as patches. Patches will also be anesthetic ie: lidocaine , or of a synthetic opiod analgesic such as fentanyl. Another popular topical cream I must mention is biofreeze. Its a menthol based cooling gel , which although a little thick, soon dries upon application. Biofreeze can offer a quick 10 -20 minute chill down for some sufferers. There are several types of cooling creams available. Anti inflammatory creams are also used such as voltarel, ibuprofen. Again, very limited success reported. They also tend to be very drying on the skin. Capsaicin cream is a 'chilli' based cream used with good success in diabetic neuropathy but not so much in EM. A few EM'ers find it eases their pain but I find it intolerable as it truly does burn - inducing a worse flare. Members that use heavier type creams also tend to wear diabetic cotton socks for comfort ie: less greasy. There are also 'icy products' that you can try - socks and flipflops. I have added links for you :)
Ice flip flops are these flips with inserts for ice packs.
http://www.amazon.com/dp/B00AWDWOTK/ref=cm_sw_r_awd_3DqEub04ZXPV3
Chillows - cooling mattress pads/pillows
http://www.amazon.co.uk/s/ref=nb_sb_noss_2?url=search-alias%3Dkitch...
Cold therapy socks
http://www.amazon.co.uk/NatraCure-Cold-Therapy-Socks-Pair/dp/B002HY...
Here are some older posts on compound creams for you.
Have also attached some research for you to download and read.
For the better treatment of EM a polypharmacy approach is advisable. Most members find that a combination of medications alongside cooling tactics, minimisation of triggers and specific lifestyle changes can help make life more comfortable.
God bless
http://forum.livingwitherythromelalgia.org/forum/topics/penetrex-vet-...
http://forum.livingwitherythromelalgia.org/forum/topics/question-abou...
http://forum.livingwitherythromelalgia.org/forum/topics/ketamine-rein...
http://forum.livingwitherythromelalgia.org/forum/topics/girl-on-fire-...
I finally got a cream made for me at a compound pharmacy . On the label it says: Keta 0.6/Amit 2/Lido 1. I know it is Ketamine, Lidocaine and I can't remember how to spell the other one. I use it very sparingly since my insurance (Blue Cross & Blue Shield) wouldn't cover it. So it was $70 for a very small amt. 30gm. Arnica also helps me when my feet are flaring. I just tried Calendula cream and that works for me. Even the cooling gel Preperation H helps when you put it on red hot flaring feet.
Hi,
My Neurologist put together a concoction of Lidocaine, Prilocaine, Lamotriine, Meloxicam and ketamine, didn’t do anything for the burning pain, I use it on other pains though… The cream was $400 for two months worth…
Hi Everyone: I'm a new member. Nice to meet you. I compound my own cream out of Allegra Diphenhydramine Cream, Prep H Cream, Aspercreme with added powdered Aspirin. I cannot tolerate most drugs: i.e. antihistamines, aspirin, bp meds. So I formulate these 3 creams together. My main issue is redness, swelling, and little ulcers on toe bases (fluid pops, I call them). I also use those no show shoe socks for compression, because compression helps me with swelling, thus keeping ulcers at bay. I also use the Natra Cure cold socks that I just keep in fridge. Fan for cooling.
Interesting combo, you are quite the budding Chemmist!
Here is what we use. We mix it 50/50. But at times just apply Lanacane without any of the other cream.
But this is for someone who has good response to Lanacane cream.
We've also used the "Foot Miracle Cream" but this is usually used on the legs which may get red and have some dry skin from fans blowing on the feet. The foot miracle cream is rarely used or requested for her feet. This of course for my mom's EM condition which might be very different from others. Recently a thing that looks like an EM flare on her leg/calf was said to be a cellulitis infection. She had antibiotics prescribed for that. Perhaps you can get both. . . of course my natural tendency is to wonder if the cellulitus thought was really that as it showed up after she walked. Then when visiting another MD he stated that there was cellulitis on her feet as well. . . which causes her to wonder if anti-biotics could help her feet more and maybe "cure it". Has anyone heard of cellulitus happening for years and years and being misdiagnosed as EM? I'm thinking that the two conditions could co-exist. It would seem to me that adding heat and walking on feet would not cause a skin infection to flare up and be relieved by chilling. It seems that physical activity and heat generating a flare and chilling points to EM, but of course off hand rather fast remarks by doctors can cause added confusion. Sorry to go a bit off topic.
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