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Erythromelalgia treatment and autoimmune
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.
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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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2 Reactions@clint81
You’ve endured this heinous condition for much longer than I have. I commend you for your courage and perseverance.
Is the med you’ve been taking mistoprolo or mistoprolol?
My dermatologist had me try metoprolol which has not worked. My next step is to begin spirolactidone.
I look forward to your reply.
Elaine
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1 Reaction@piemonte it’s Misoprostol 200 mcg tablets. I started out on 4 a day and now I’m down to 1 a day.
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1 ReactionDid you have any adverse reactions? Has it mitigated the pain from flares?
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1 Reaction@piemonte
Yes, my son and I both get this randomly in our palms and soles of feet for decades. We can stop it in hands by holding our arms straight up over head for 5 minutes and feet, lie on back on bed or floor and put heels of feet against wall so legs are extremely elevated for 5 minutes. The elevation seems to do the trick. Naturally, if you’re not at home when it starts it’s a little more challenging. We looked pretty silly walking around with arms in the air for 5 minutes but worth it. Hope this works for others.
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1 Reaction@piemonte I’ve had no bad reactions from the medicine. It has taken about 90 to 95 precent of all redness, burning, pain and inflammation away. It had truly been a godsend for me.
I’m going to ask my dermatologist if I can try it. I am desperate for relief. My flares last a few hours each time. I am completely housebound.
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1 ReactionFor twenty years I thought I had erythromelalgia. Then I read that it could be chilblaines because it was seasonal. My feet got sores on the toes and I could barely walk in the winter. It turned out to be chilblaines; my feet couldn't adjust to temerature changes. I was put on Nephepine and it stopped with the first dose!
@clint81
Would you mind giving me the name of the doctor you saw at Johns Hopkins?
@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.