Erythromelalgia: What medications or therapies have helped you?

I am newly diagnosed 5 months ago and started on pentoxifylline 600mg 3x daily, Nacetyllcysteine 600mg 2x daily,gabapen 600 mg At hs, voltaren gel up to 4x daily, oxycodone for pain

Another good resource that you may want to take a look at if you have not already seen it is the Erythromelagia Association website - https://erythromelalgia.org/

I have been on there. Thank you.

My symptoms are terrible itch on fingers when by body warms up at night.All med trials failed. After my prompting because of everything i have read, MD finally prescribes topical- ketamine10%,lidocaine5%& amitriptylene5%. Given high cost I asked pharmacist if it has a good chance to work. As wasn’t certain she consulted association who suggests: naltrexone.5-1%,lidocaine 2% & ketotisen.05-even more costly! Anyone have good experience with these. The pharmacy association suggesting 2 ingredients I never read about.

Hi Linda,
I moved your message about looking for help for your itch to this similar discussion:
- Erythromelalgia: What medications or therapies have helped you? https://connect.mayoclinic.org/discussion/erythromelagia-medicationstherapues/

I did this to connect you with others living with erythromelalgia like @ellen50 @cherman @dipperlip1 @kellyc14 @emishell2022 and others.

Not much helps and I also have Raynaud's and developed neuropathy about 2 years ago. Dr. Jay Cohen was a dermatologist who suffered from EM for many years. (he has since passed from something else) He tried many meds and natural products and so have I. Some helped and others made it worse. You can find his publications either under his name or thru the Erythromelalgia Ass. website. I use Asper cream with Lidocaine most nights on my feet. I helps somewhat with the burning for a few hours. Sleeping is very difficult. Hope you find something that helps.

Thank you

I use the ketamine/lidocaine/amitriptiline cream on my feet, but not my hands usually. On my hands, my dr has me using rhofade, meant for rosacea, but definitely takes the sting and itching out. I’ve used aspercream as well, but rhofade seems to have a li fee lasting effect for me. Pricey, but takes very little and you may be able to get insurance to cover most or all of it, unlike the compound cream.

Thank you Kelly. Are you saying it relieves the itch for you. I am in Canada, and I’m not certain from my initial web search that it is available in Canada. Will speak to my MD and pharmacy.

@linda19
It is good for knocking down the painful flares, which for me are red, hot, and sometimes itchy. The Rhofade seems to be longer lasting than the otc aspercream and I also prefer putting it on my hands than the lidocaine/ketamine/amitriptiline, as I didn’t want to touch my face or anything with that on my hands. Rhofade is meant for rosacea, so no concerns if you do touch your face.