Patient Comments: Erythema Nodosum - Experience

Please describe your experience with erythema nodosum.

Comment from: Lauren S., 25-34 Female (Patient) Published: October 29

I have not been formally diagnosed with erythema nodosum (EN), but after having a third identical flare up in the past 5 years, I suspect this is the culprit. The first time, I thought it was a severe reaction to mosquito bites. However, I live in Texas and get bitten every summer by mosquitos and am usually fine, just itchy. The second time it happened was about a year later and I went to two different doctors who had no idea what it was and just called it cellulitis. I'm currently experiencing my third flare up. It started in one spot and felt like a swollen bruise under the skin on my thigh/quadriceps muscles. Over the next few days more tender spots started cropping up on my calves, shins, and other thigh. Luckily I haven't experienced the extreme swelling and redness that others here have mentioned, but it's still painful and my legs feel achy; like I've been through a strenuous workout. I have a doctor's appointment tomorrow and am going to mention erythema nodosum to see if they can properly identify it or any underlying factors that may be causing it. I am trying not to worry myself too much and keep reminding myself that this has happened before and it went away on its own. However, when you read some of the underlying causes are sarcoidosis and other such diseases it can definitely get the worried thoughts going!

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Comment from: judomom, 45-54 Female (Patient) Published: July 02

I was first diagnosed with erythema nodosum (EN) in March 2014 after visiting the Yucatan peninsula. I first thought it was bug bites from the Mayan ruins. After many months of tests and visits to different specialists I received the diagnosis of EN without any underlying cause. The original outbreak of red itchy bumps over my entire body has decreased and now it is limited to my lower left leg. No solution was given to me by the many specialists I visited. However, I have found relief from my chiropractor using the same low lever laser therapy used to reduce my aches related to arthritis. I still get flare ups but the weekly light therapy has reduced the bumps and there is no need for medication with all the side effects.

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Comment from: JC, 45-54 Female (Patient) Published: June 15

I am 54 years old and have ulcerative colitis (UC). I had a pretty bad flare with my ulcerative colitis that went on for a couple of months. I started feeling like I had the flu and the next day a big red bump appeared on my ankle and over the weekend several more popped up. They are very painful and swollen. I went to my doctor and luckily she diagnosed me correctly with erythema nodosum. I also went to the dermatologist and they confirmed. I had flu symptoms and extreme pain for about 10 days and finally started prednisone and potassium iodide. I also got Vicodin for the pain so I could at least walk. I'm currently at week 8 and a lot of the bruising is gone, but both ankles still hurt and continue to swell. They think this was brought on by my UC and the flare I was having. I have had UC for 10 years and never gotten this stuff and I wouldn't wish it on anybody. The pain is horrible and it totally interrupts your life.

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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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