Autoimmune diseases as underlying condition in secondary EM

General
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Hi peeps :)

I'd really like to know how many of the patients here with secondary EM have some autoimmune disease too. For ex. RA, Lupus, Scleroderma, autoimunne thyreoditis etc. If you do have autoimmune disease then which one? And does treating the problem (I know autoimmune diseases arent cureable, but they can be treat to relief the symptoms) help you with your EM?

Please, share your story about your life with autoimmunity problems and EM. Thanks a lot. Liz

P.S. I do have Hashimoto thyr. and high ANA, so I should be checked for more possible autoimmunity probs but I cant kick my own butt and go to the doc. :) Lately I noticed swelling of joints on my right hand so I hope its not RA. My mom and grandma have it.

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Ironically enough, I have Lupus and have been in remission from it for about 16 years post chemotherapy, but my doctors believe it is not the cause of my EM and they are two separate conditions I was just unlucky enough to have…

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and I have yet to find a doctor who even knows what EM is....but I do have Polythemia Vera and that is where i read that EM can be secondary to polythemia vera....not even sure if it is an autoimmune disease as my doctor has got gone into much detail about it....I know it causes your body to produce extra red blood cells resulting in thickening of the blood which could lead to clots, stroke, heart attacks, and ultimately lukemia.....

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Hi Liz

I have RA, and Im pretty sure the EM is secondary to that as it came on slowly slowly over the years in parallel with the RA. The RA is under control but the EM isn't. HOWEVER...I have noticed that the EM increases in the presence of inflammation and goes back down again when this is under control. So I had a huge infection of my EM ulcers and the EM went mad. I am in my third week of antibiotics, the inflammation is under control and my EM is better - still flaring but I can get out and about for short periods. I think originally the inflammation of RA somehow kicked the sodium channel regulation out of kilter, and once out it seems like it has a life of its own (the ratchet mechanism) so you have to make sure the inflammation is under control but also address the sodium channel directly. I do wonder whether there are other inflammatory measures which might reveal the presence of inflammation more specifically than the ESR and CRP tests for RA. I will ask my pain specialist. I also noticed when I had to come off one of the RA drugs and there was a slight increase in swelling the EM got worse.

Cheers ajh

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After 8 years, including a trip to Stanford, I finally found a Doc in Chico CA (a neurologist) who knows about EM. I have undergone a tremendous amount of blood work and other test and get my results in two week. I am very scared. As a side note, I have also been DX with FMS, ISB, PTSD, sleep apnea and chronic sinusitis.

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Dizzy, I live in Santa Rosa, CA. Could you send me the name of your doctor in Chico? Thanks!
(Oddly enough we are heading to Chico tomorrow for a birthday party)

I got EM during my pregnancy. It seems that most if the heat has gone but I do get minor flares. I spent 4 months in a cold foot bath as I had a 24/7 flare during that time.

There is a part of me that thinks that I have an auto-immune that was not diagnosed. They tested me for so many things. I still have peripheral neuropathy in both feet that I hope will heal but I’m starting to believe my numb achy feet are just my new “normal”.

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In my case: autoimmune thyreoiditis (Hashimoto) and EM

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I have had an undifferentiated connective tissue disease ("UCTD") for the past two years (basically, my doctors have confirmed that I have an autoimmune disease going on but they don't know which one it is yet). Doctors think it may become scleroderma or lupus, but everything's up in the air till I possibly develop more symptoms. I take Plaquenil for the UCTD.

I also have Hashimoto's thyroiditis, which I have had for the past seven years.

The EM started showing up a few months ago, and I didn't think too much of it until it became a daily thing that kept getting worse the warmer the weather got. I have EM in my feet, knees, hands, and face. My doctors think that the EM is secondary to my UCTD.

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I had a borderline ANA (1:40) for over 10 years then came down with EM two years ago. I was tested for every autoimmune disease they could think of and Lymes but nothing came up…6 doctors i think! recently Found a great neurologist is Boston who said I don’t have an underlying condition, and am having good success with Lyrica and now Melixetine. Last week my PC ran some bloodwork for my physical and we threw in a few extra tests only to find my ANA is now higher as well as a few other basic inflammatory markers. Am waiting on results of a more detailed set of tests…here we go again.

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Hi, I'm new to this group. This is exactly one of the topics I was hoping to find.

I have Hashimoto's, Fibro., SLE - lupus, and of course, EM.

My symptoms started with a tingle in my big toe in Jan 2010. Within 4 months I had full blown, full time EM, and rapid onset of poly neuropathy. It went above my ankles, perfectly even across both legs, like red socks. I developed a strange acting DVT, blood clot, in my lower leg...that puzzled doctors. I went to dr after dr, and was told over and over that they had "no clue" why was wrong with me. Since I had very swollen veins along with all this the Hematologist put me on Coumadin, which helped some..called it Auto-immune Vasculitis. No such thing. Then I went to a neurologist who was completely puzzled by my photos. After much searching I discovered EM and took the info to him. He agreed and diagnosed me with EM early 2010. I started Lyrica...which helped calm the horrible zaps and nerve pain.

I had to lessen my work hours, couldn't sleep, had horrible fatigue. I lived under a fan, etc. my life basically stopped. Any heat, socks, warmth, sent me into a EM flare. They were constant.

Sept 2011, I developed another blood clot in my upped arm. I spent 3 weeks in the hospital, I still had them baffled. My Rheumi finally diagnosed me with Lupus, with Vasculitis complications.

The normal treatment is steroids...I can't take them they make my EM symptoms so much worse. Has any one else had this happen? A new drug for Lupus had just come out, Benlysta. I started it Nov 2011. With in 3 months I noticed less EM activity. I attributed it to the winter weather. As time has gone on, I have almost no EM activity. Hot weather, and socks sets it off, but it's a lot better than before. My whole body has cooled off, I actually get chilled now before anyone else, I can tolerate the room at 72 degrees, I'm not living under a fan 24/7, ( though I still need one to sleep, with my feet uncovered :). This was a surprise to my Rheumi. I've had other issues with this medication which has made us wonder if it's good for me...but the thought of going back to how I was isnt a good option either. So now She wants me to go off the medication in the fall to see if the medication truly helped my EM or if I just went into a remission. Then we could decide if the benefits outweigh the side effects.

Meanwhile, the neuropathy has gone up to my ankles, it makes walking difficult. Its some pretty painfull stuff. I can't work, and having Lupus has just complicated everything. But, for now, my EM seems to have been calmed down.

Im hoping to find another with EM and Lupus who has take Benlysta. I want I know if they had the same results. What do you think the odds are of me finding that person. LoL.

This my story so far.

I'm glad to be part of this group, no one else knows what this is like...

1 Like
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I have Grave's disease (thyroid) and I have also thought my EM was related to my autoimmune disorders. I saw that someone else mentioned steroids: I was on steroids just before my EM showed up - for bursitis in my shoulder. That's interesting.

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I have Graves Disease 37 years ago and my daughter has Hashimotos. I believe there is a connection.

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I too had Graves Disease 37 years ago. I had surgery at that time and had my thyroid completely removed. The EM started about 5 years ago and has gotten progressively worse. What is weird is that I have had an ANA test done twice recently and tested negatively for antibodies. That is such a shock to me since I have had Graves Disease.

MsKim said:

I have Grave's disease (thyroid) and I have also thought my EM was related to my autoimmune disorders. I saw that someone else mentioned steroids: I was on steroids just before my EM showed up - for bursitis in my shoulder. That's interesting.

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It seems to me that there has to be a connection to autoimmune disease. At least, to a dysfunctional immune system. Unfortunately, once you've had an autoimmune disease, removal of the target organ does NOT cure you of immune system problems. And a negative ANA does not mean no autoimmune disease.

twinklee said:

I too had Graves Disease 37 years ago. I had surgery at that time and had my thyroid completely removed. The EM started about 5 years ago and has gotten progressively worse. What is weird is that I have had an ANA test done twice recently and tested negatively for antibodies. That is such a shock to me since I have had Graves Disease.

MsKim said:

I have Grave's disease (thyroid) and I have also thought my EM was related to my autoimmune disorders. I saw that someone else mentioned steroids: I was on steroids just before my EM showed up - for bursitis in my shoulder. That's interesting.