Patient Comments: Erythema Nodosum - Experience

Please describe your experience with erythema nodosum.

Comment from: CDH, 55-64 Female (Patient) Published: January 23

I first got EN (erythema nodosum) in 2007 after walking through a natural wetlands. I was 51 and towards the end of menopause. I kept sniffing my nose while walking through the wetlands so there was lots of mucus in my nose. A few weeks later I got the first red spots on my legs that felt like bruises. It took over six months to get properly diagnosed and by then I was chronic. I went to several doctors before I found out what it was. By then I had it all over my body. I could not walk very well and had pain everywhere especially my hands, legs and feet. I was put on prednisone which was gradually increased up to 30 mgs per day for months. I was finally sent to a rheumatologist who put me on methotrexate, a medication used for arthritis. I got 25 mg injections once per week for just over two years. It just came back in the fall of 2013. I am going back on methotrexate 7.5 mgs now because it's not going away on its own. This medication is taken once per week. I am also taking a steroid pack to keep my immune system back some. This is extremely painful. There has been no underlying cause diagnosed; however, I believe I inhaled some type of fungus while walking through the wetlands and my hormones were wacky from menopause. I believe it came back because of stress. Last two years of my life have been extremely stressful and emotionally difficult.

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Comment from: MHOBBS8854, 65-74 Female (Patient) Published: October 31

I had the flu 2 years ago and one of the symptoms was pain in my thighs and under my knees. A huge bump appeared above the knee and below the knee. They were very painful and sensitive to the touch. Sometimes they are hot. No one seems to know what to do about them. They are extremely painful and prevent me from walking very far. I have had them for 2 years and they flare up every 2 to 3 days.

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Comment from: Lee 76 yr. old, 75 or over Female (Patient) Published: October 08

About a year ago I had several bouts of bronchitis and pneumonia. Just as I was recovering, red bumps appeared on my calf of one leg. I thought at first it was a boil, but it became larger and more red bumps appeared. My primary physician immediately diagnosed it as erythema nodosum. She sent me to a dermatologist and a biopsy confirmed it. I had a low-grade temperature and felt like I had flu. The dermatologist injected steroids in individual nodules that were painful. Now, six months later, I have nodules all over my arms and legs. Today another appeared on my feet. These are not red, just bumps from a small, round bump to large bumps that are swollen. I have trouble walking because of spinal stenosis, and these nodules make it harder. Today I had injections in my spine, so that pain is gone, but nodules on my arms and legs are still spreading. No known cause has been diagnosed. I was told it was a deficient immune system disease.

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Comment from: Colegail, 25-34 Female (Patient) Published: December 04

I have had outbreaks of erythema nodosum since 1993. My dermatologist told me it was an allergic reaction to something in my blood stream. She suggested I pay attention to what I have been eating when I start to break out in these painful bumps. So I did. It was soy ... anything with soy in it is a big “no” for me! That was what triggered it. To this day, if I slip up and eat something with soy in it, I will break out on my legs. So I suggest to everybody out there who is stumped and cannot figure out why you're breaking out with these painful bumps, pay attention to what you're eating! It may be something as simple as what you're putting in your mouth! I hope this helps, because I know how painful this can be!

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Comment from: Scotty, 65-74 Female (Patient) Published: July 11

I had a flaky area of skin on my left leg down towards the side near the ankle. This has mostly gone away and there is not much to see, but now on my right leg there is another flaky spot similar to the first one but it is a bit raised and is red. My doctor has given me a cortisone medication which seems to be reducing the area of erythema nodosum somewhat in just 2 days.

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Comment from: Springlight, 35-44 Female (Patient) Published: January 05

I have suffered with chronic idiopathic erythema nodosum (EN) for the last 19 years. It first started when I had a glandular fever for a few weeks. It began with tender, red lumps all over my lower legs. I have had numerous tests including several biopsies, which confirmed EN. I have also had X-rays to rule out tuberculosis (TB) and a colonoscopy, which ruled out Crohn's disease. My legs are tender and swollen, red and angry, and black and blue all at the same time. I have stopped worrying about how my legs look when I have to wear a skirt; it is something I can't do anything about. I have days where I can't walk, as the skin on my shins is so stretched and hot that only cold compresses and aspirin will help me. I have had prednisone and various steroids over the years, which only seem to aggravate it. My doctor is convinced that we have exhausted all the avenues to discover the underlying cause, and we will probably never know. It's a miserable, painful affliction. If you only experience it for a few weeks or months, count your lucky stars: There are those of us out here that have had this terrible condition for half of our lives.

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