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Erythromelalgia: What medications or therapies have helped you?

Autoimmune Diseases | Last Active: 20 hours ago | Replies (32)
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@linda19

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.

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Replies to "My symptoms are terrible itch on fingers when by body warms up at night.All med trials..."
Colleen Young, Connect Director | @colleenyoung | Feb 25, 2023

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.

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drolker | @drolker | Feb 27, 2023

I’m using the ketamine, lidocaine, amytriptoline cream. I get it from a compounding pharmacy and yes it is expensive $85 a jar. It does help. But doesn’t stop it. I also have “ ice socks”. Buy them on Amazon.
Take gabapentin 300mg 3x day. I think I need more at evening dose . I sleep with ceiling fan, tower fan on my feet and keep the heat low in my house( 63 degrees) .

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