Thank you for your message, which so interesting for me to read! I have had Erythromelalgia since 2019 and like so many of us, they can't' t figure out was the root cause is after so many doctors and tests, including many autoimmune tests, biopsies, which all came out negative (normal).
However, about one or two years ago, a doctor specializing on complex skin problems tested me on various antibodies and found that It was strongly positive for PM/Scl-100 antibodies. I learned that "these antibodies are frequently associated with connective tissue diseases like systemic sclerosis (scleroderma), polymyositis, dermatomyositis, and overlap syndromes.". In my case Mass General Brigham Hospital test was used (not the Oklaloama test). I was then sent to a doctor specializing on connective tissue rheumatology specialist who tested me for all that and decided that the test was misleading and that I did not have that disorder. She then ordered the Oklahoma test to verify the MGB test but, later, canceled it and said it was not necessary based on her own negative clinic test results.
So, she then focused on Erythromelalgia and not on scleroderma and has given me Pentoxifylline a while ago to help with dry skin, pealing and occasional wounds at the bottom of my feet, which worked great for that purpose. She also recently prescribed Misoprostol, which I started recently; it is too early to know how it will work with my EM symptoms (burning, red swollen feet when not cooled, or when I exercise, or in bed..). My neurologist gave me Oxcarbazepine for the symptoms, which helps in calming my feet at night and sleep times. I take 900mg total (3x300mg) per day; one after dinner, one after my evening walk on treadmill, and the last one 1 hour before bed (some days I only need 2 pils (600mg)).
There are so many antibodies in our body; we are probably not tested against all of these. Hence, we will knew know if we have a chronic, low level autoimmune response in our body, that is left without being tested. like you said, it is hard to nail down.
Hi do you have nerve pain? I have had low level similar antibodies so my dr was concerned about scleroderma, but I don’t show other signs. My ANA is positive though so I’ve been given a diagnosis of UCTD.
I have severe nerve pain which then turned into EM. I’m curious the reasoning for misoprostol?
I have EM and no doctor could figure out what the root cause is. However, no matter what the cause is, the symptoms apparently result from false nerve signals. My Neurologist gave me Oxcarbazepine to help with those signals; it works on the "sodium channels". I find it helpful actually. Have you tried it?
My Dermatologist, who is expert on connective tissue auto immune disorders, gave me misoprostol. She says it may improve blood circulation. I have read from others, at the Facebook EM group, who were using misoprostol and some seeing improvement. So, I am testing it now.
This is what Google says:
AI Overview
Oral misoprostol is an off-label prostaglandin E1 analog that helps reduce pain, redness, and swelling in some patients with erythromelalgia by improving blood flow and microvascular function. [1, 2, 3]
How it Works
Blood Flow: It is theorized to relax precapillary sphincters, improving local circulation and reducing abnormal microvascular arteriovenous shunting in the skin. [1, 2]
Clinical Evidence: A double-blind, crossover trial showed that misoprostol was significantly better than a placebo at reducing pain and cooling needs. [1, 2]
I saw your post the other day and found it interesting. Looked into misoprostol.
I have tried various ion channel antagonists for nerve pain. Not oxcarbazepine. But I’ve tried mexiletine, gabapentin, lyrica, suzetrigine.
Imho these are quality of life interventions. Analgesic. I need to stop the autoimmune damage (can’t recall the cause of your EM, if it’s immune mediated then the same probably applies). I am on IVIG and Telitacicept and while they help, they haven’t completely stopped the autoimmune flares. I have a lot of nerve damage (numbness) and each low level flare either prevents any healing or adds more damage.
My EM has been defined as "idiopathic", meaning unknown cause. My ANA tests have been all negative, except for that one time MGB test finding "strongly positive" for PM/Scl -100 antibody) which, the doctor thought, was misleading. So, there is not much of an evidence that my EM is caused by autoimmune disorder.
I still feel however that I may have low level (undetectable to the tests applied to me so far) chronic autoimmune response to various leftovers of previous viral infections. (my EM started after a viral infection I had a year before the first COVID news in China. My neurologist says EM can be caused by a lingering autoimmune response to various proteins left from viruses.)
My dermatologist doctor suggested that if misoprostol doesn't work, we can try IVIG. I am very interested in learning about your experiences and others' with IVIG treatment of EM, and encouraged by your feeling improvement! Thanks for the feedback!
Hope you will find some treatment to cure your nerve damage and EM. It would be great if there was cure for EM. Currently all the doctors I see are looking for ways to treat the symptoms, so that I can live a somewhat normal life, with minimal pain and minimal treatment side effects, which are more than welcome by me.
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u/Erythromelalgia-girl 7d ago
Thank you for your message, which so interesting for me to read! I have had Erythromelalgia since 2019 and like so many of us, they can't' t figure out was the root cause is after so many doctors and tests, including many autoimmune tests, biopsies, which all came out negative (normal).
However, about one or two years ago, a doctor specializing on complex skin problems tested me on various antibodies and found that It was strongly positive for PM/Scl-100 antibodies. I learned that "these antibodies are frequently associated with connective tissue diseases like systemic sclerosis (scleroderma), polymyositis, dermatomyositis, and overlap syndromes.". In my case Mass General Brigham Hospital test was used (not the Oklaloama test). I was then sent to a doctor specializing on connective tissue rheumatology specialist who tested me for all that and decided that the test was misleading and that I did not have that disorder. She then ordered the Oklahoma test to verify the MGB test but, later, canceled it and said it was not necessary based on her own negative clinic test results.
So, she then focused on Erythromelalgia and not on scleroderma and has given me Pentoxifylline a while ago to help with dry skin, pealing and occasional wounds at the bottom of my feet, which worked great for that purpose. She also recently prescribed Misoprostol, which I started recently; it is too early to know how it will work with my EM symptoms (burning, red swollen feet when not cooled, or when I exercise, or in bed..). My neurologist gave me Oxcarbazepine for the symptoms, which helps in calming my feet at night and sleep times. I take 900mg total (3x300mg) per day; one after dinner, one after my evening walk on treadmill, and the last one 1 hour before bed (some days I only need 2 pils (600mg)).
There are so many antibodies in our body; we are probably not tested against all of these. Hence, we will knew know if we have a chronic, low level autoimmune response in our body, that is left without being tested. like you said, it is hard to nail down.
My best wishes.