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Anyone out there with Erythromelalgia?

Autoimmune Diseases | Last Active: May 12 7:45am | Replies (298)
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@jeichmann21

Hello- I’m new hear. I had EM for 2 years and it has now been dormant for 8 years. Hopefully forever! I received the J&J vaccine after much debate as I don’t want anything to bring the EM back. Anyway, it’s time for a booster and by the looks of it J&J is not a very effective vaccine. I’d like to get Pfizer but am nervous as I’ve recently read about some cases of acute EM (it went away) after getting moderna and Pfizer. Again, I want to be protected but don’t want to risk the EM returning. Coming here for real world experiences with the vaccines and EM. Thanks!

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Replies to "Hello- I’m new hear. I had EM for 2 years and it has now been dormant..."
John, Volunteer Mentor | @johnbishop | Nov 9, 2021

Hello @jeichmann21, Welcome to Connect. It is really good news to hear that your EM went into remission and it has been over 8 years. Until we hear from other members with Erythromelalgia who can share their experience with you, I found some information that may be helpful.

"Reports indicate that nearly 10% of patients may achieve spontaneous remission of their symptoms, never to be affected again. The principles of treatment in erythromelalgia are aimed at correcting the underlying cause." -- Erythromelalgia - American Osteopathic College of Dermatology: https://www.aocd.org/page/Erythromelalgia

Current pain management strategies for patients with erythromelalgia: a critical review: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6121769/

Are you able to share any information on your treatments before EM went into remission?

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