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Erythromelalgia treatment and autoimmune

Posted by haileyrose @haileyrose, Apr 28, 2024

Hi all,

I (31, F) have been experiencing Erythromelalgia for about 1.5 years. I was diagnosed officially about 6 months ago.
-Asprin didn’t help
-Magnesium does seem to help.
-I have symptoms the worst in my hands, then feet, and also at times get redness on my face and ears as well.

I’ve had various other random symptoms over the last 10 years which lean towards being possibly autoimmune related. Because of this, I recently was referred to a rheumatologist who flat out denied that Erythromelalgia is related to or coincides with autoimmune conditions. I was flabbergasted by this.

So now I’m at square one, and am receiving no treatment for my EM. Any insights or suggestions? I feel stuck and frustrated.

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

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pkagarwal | @pkagarwal | 8 hours ago

We talk a lot about different drugs for EM in our TEA Zoom monthly meetup. One things I have learned is that there is no one size fits all. For non-inherited EM everyone has a different recipe that works. Come join the group and you’ll learn a lot.

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piemonte | @piemonte | 7 hours ago

Thank you. I will join the group.
Can you send the link??

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piemonte | @piemonte | 7 hours ago
In reply to @clint81 "@piemonte Dr Jun Kang he is an autoimmune disease specialist for John Hopkins Dermatology. I had..." + (show)
Profile picture for clint81 @clint81

@piemonte Dr Jun Kang he is an autoimmune disease specialist for John Hopkins Dermatology. I had gone to about 10 different rheumatologist and nothing they did worked. Finally the last rheumatologist I had said we have a Dermatologist that is an autoimmune specialist here and he is said to work miracles. So I went because I was out of options and he really is a godsend. Besides my normal everyday doctor he is the only one I see now.

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@clint81 thank you so much. Do you live in the vicinity of John’s Hopkins? It would mean a plane trip for me. That doesn’t really matter. I just need help.

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sharshy | @sharshy | 5 hours ago
In reply to @clint81 "I have had Erythromelalgia for almost ten years now. Nothing they tried worked. I finally was..." + (show)
Profile picture for clint81 @clint81

I have had Erythromelalgia for almost ten years now. Nothing they tried worked. I finally was able to get in with a specialist at Johns Hopkins and he has been a blessing. He put me on Mistoprolo and it has almost taken my symptoms completely away. Hope this helps because I completely understand your pain.

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@clint81 What meds do you take for Erthromelalgia?

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piemonte | @piemonte | 3 hours ago

Tried metoprolol but it hasn’t helped at all.

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