1. < Autoimmune Diseases
Profile picture for cherman

Erythromelalgia: What medications or therapies have helped you?

Posted by cherman @cherman, Oct 2, 2022

Just opening for anyone to provide the helpful things they recommend for EM.

Currently only in pregabalin and cBD oil for feet.

All comments on nutrition and therapies welcomed.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Profile picture for nancyc777
nancyc777 | @nancyc777 | Apr 22, 2024
In reply to @ellen50 "I am newly diagnosed 5 months ago and started on pentoxifylline 600mg 3x daily, Nacetyllcysteine 600mg..." + (show)
Profile picture for ellen50 @ellen50

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

Jump to this post

How are you doing now? I am spending most of my day on the couch because of the pain. I just read that new studies show that erythromelalgia may possibly be "a syndrome of dysfunctional vascular dynamics", so the pentoxifylline may just work for you. I just wanted to know who prescribed this for you, and is it helping to relieve your pain? Did you go to the mayo clinic? I think I might ask my primary for this to see if it will work. Stay strong. I hope you are finding some relief.

REPLY
Profile picture for raebaby
raebaby | @raebaby | Apr 24, 2024

Have you tried Nephedepine. It helped me. It's a blood pressure drug that stopped the pain immediately in my feet.

REPLY
Profile picture for hottoes10
hottoes10 | @hottoes10 | Dec 27, 2025
In reply to @dipperlip1 "Not much helps and I also have Raynaud's and developed neuropathy about 2 years ago. Dr...." + (show)
Profile picture for dipperlip1 @dipperlip1

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.

Jump to this post

@dipperlip1
Hi, when I read your post from 2022 about being diagnosed with EM, Raynaud’s and your toes swollen red and burning, I felt as if it were my words. So hard to get good rest, can’t say how many times I’m running cold water on them just to get to sleep. As you said, swollen and painful when your feet hit the floor then better after a few hours, all to start again by afternoon. I can be sitting in a recliner with feet up and watch and feel them swelling and hurting. I use to complain when they were so cold I couldn’t get them warm but that part is a breeze now. Mine are hot & swollen 75% of the day if not more.
Have you found anything that helps? Dermatologists gave me creams, didn’t help; podiatrist gave me cream that didn’t work and told me to quit smoking or I’d lose my toes because of micro-vascular disease. I can see that happening with Raynauds but when I told him I put my feet in ice water to get relief he said well that’s just the opposite, what about hot water. NOT when there red & swollen, can barely stand warm water.
Mine started in April 2022 @ 52 yrs old which I find strange. I did have Covid in Jan prior. Sorry I’m writing so much, I joined group to see if I could get in touch. Can I ask if your a smoker? I know I need to quit but won’t be in such a rush if your not. Not even sure how I see messages/replies on here yet but hope to talk with you soon. So sorry you’re dealing with these AWFUL, PAINFUL symptoms.

REPLY
View MoreView Less
Please sign in or register to post a reply.