Patient Comments: Erythema Nodosum - Experience

Please describe your experience with erythema nodosum.

Comment from: IjahJoy, 35-44 Female (Patient) Published: May 27

I first had erythema nodosum at 19. I had 8 total lesions on my legs and buttocks. They were red and raised, finally they opened and drained. I could barely walk for 2 months. I was told that I had spider bites. This was between July and October of 97 and in March 98 I was diagnosed with Crohn's. I didn't have another lesion till December of 99. It cleared after high dose prednisone and subsequent Remicade. For the next 10 years I didn't have an issue. I had an intestinal rupture and dealt with a bag for 7 months. During this time I wound up with pyoderma gangrenosum. For the next 3 years I had this around the stoma location and on my legs. I continued on biologic medicines that worked on the whole immune system. But in February this year I was changed to Entyvio and the erythema nodosum has returned. I had my first episode 1 month after the first treatment. Now I am going in for my 4th treatment and it has returned on my feet.

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Comment from: Jacqueline, 7-12 Female (Caregiver) Published: March 19

I had erythema nodosum in the 1950s when I was about 8 years old. I had had a throat infection for which the doctor gave me penicillin which brought me out in a rash, so he said I must be allergic to the penicillin. The next the thing I remember is getting pains in my legs and a blotch which appeared on the bottom of my shin. The doctor then sent me to the clinic to check for tuberculosis which came back clear. The next thing I can remember is being bed bound for about 6 days and having a cage over my legs as I couldn't stand the bed clothes on my legs. I also remember my legs peeling and as a child used to love peeling the skin off. I used to have aspirin every four hours for the pain and had to learn to walk again.

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Comment from: JEG, 55-64 Female (Patient) Published: November 14

About once a year or less I break out with erythema nodosum. I have never been treated with any medications. Last year one spot remained, but after a massage, it went away. A new bout recently erupted and I have a massage scheduled to see if it will work again. I just exist with it. I think it is stress related in some way, although I am not really aware of any outstanding stresses.

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Comment from: 60700sunny, 19-24 Female (Patient) Published: November 11

I was diagnosed with erythema nodosum when I was 18. It started out as small bumps for a couple of weeks after a bad strep infection. They got worse and my ankles were swollen and I could not walk or wear shoes. I went to numerous doctors before getting a diagnosis. It was horrible excruciating pain and I had to do five rounds of steroids before it all went away.

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Comment from: boxorocks, 25-34 Female (Patient) Published: October 30

I got erythema nodosum around 1982, when I was 26. No one knew what it was! I looked it up in a PDR (physician's desk reference) at the library. It was caused by penicillin, but what I found out was Ovaril was making it worse. It took 3 months for it to go away after I stopped the pill. It would flare with my hormones. I finally found a doctor who listened and he gave me potassium iodide, which helped. I was infertile years later when I wanted children, had a miscarriage, and never became pregnant again.

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Comment from: momoffour, 55-64 Female (Patient) Published: May 22

I first got erythema nodosum (EN) in 1980 at the age of 30. I had 6 nodes in one calf and 7 in the other. I was fitted for surgical stockings for the swelling. Every spring after that it came back with a vengeance. Through trial and error, I learned that (1) at times I was taking a sulfa drug that caused it, and (2) that I was allergic to something that was in the air in the springtime. I took allergy tests (400 allergens) and was given a serum made of my allergy suspects in order to develop my immune system. For the nine months I was taking the shots, my EN did not go away. For me, taking Keflex as long as needed (as much as 6 weeks), has been the best treatment. Today, after thirty four years, it is back again, thanks to an allergy and springtime! In those 34 years I have had five doctors misdiagnose it as thrombophlebitis and try to get me to take blood thinners! Thank goodness I found that dermatologist!

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Erythema Nodosum - Treatments Question: What was the treatment for your erythema nodosum?
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