In August of 1980 at age 17 I started getting red spots on my lower legs that my mom thought were insect bites. They got larger and multiplied daily until they extended to the top of my thighs. My legs and feet swelled and hurt so much I couldn't walk. I hurt all over and they started looking black. This occurred over about 10 days. Finally, my mother took me to our doctor. I was hospitalized immediately and told I had erythema nodosum. I was put on massive doses of cortisone, prednisone, and antibiotics for strep throat. I had strep four times that spring and summer. I was put on Z-Bec vitamins twice a day. They also rubbed cortisone cream thoroughly into my skin twice daily, wrapped me in Saran-type wrap up to my bottom, and then wrapped me in ace bandages. I also had IV fluids for two weeks. Finally, I started improving and was and able to return home. I remained on cortisone cream and prednisone for months. I took the Z-Bec vitamins twice daily indefinitely. I was instructed to be very sedentary and return immediately if new spots came up. After 6 months, I was well and haven't had any new outbreaks. I still take Z-Bec vitamins as an immunity booster.

Approximately 11 years ago, I woke up one morning with a red painful lump on the outside of my right lower shin. At first I thought nothing of it and put it down to a cyst. Then a couple of days later another one appeared and then another so I visited my GP. He advised it was erythema nodosum (EN) and said it would go away within 6 weeks and gave me a course of antibiotics (which didn't work). He also said that anti-inflammatories may help but I am allergic to them so they weren't an option. Six months and several courses of antibiotics (which hadn't worked) later, I was finally referred to a dermatologist. He prescribed me Betnovate which again didn't work. I was given several medications including steroids, immunosuppressant's (anti-rejection drugs for transplant patients) and raw potassium-iodide amongst many other medications (that I don't remember the names of) but still nothing worked. I have also had 2 biopsies taken but they came back inconclusive. Eventually (approx. 6 / 7 years ago) I was prescribed Dapsone 50 mg twice daily. Dapsone is often used to treat leprosy. It is a third line therapy where EN is concerned but it seems to be the only medication that has actually helped me. Dapsone didn't cure the EN initially but kept it at bay and the flare-ups have not been anywhere near as bad as they have been previously. I haven't had an attack / flare up for well over a year now and this is the longest I have gone without one so I hopeful that I am finally rid of it. Also, the brown bruise-like scars the lesions have left behind are starting to fade. Throughout the 11 years that I have had EN I have seen several GPs and dermatologists (due to relocation) and I am really quite surprised at how many of them were so keen to prescribe me with antibiotics. I am no expert but I do not believe that EN is an infection so naturally the antibiotics never worked. I am hopeful that it may have gone for good but for those of you who are still suffering with it, it may be worth mentioning Dapsone to your GP / Dermatologist. There can be side effects from Dapsone including headaches and fatigue. When I first started taking Dapsone I had to have fortnightly blood tests to monitor my red blood cell count and hemoglobin levels. This is because Dapsone reduces the life span of red blood cells by approximately 33% and this has left me slightly anemic. My hemoglobin levels were slightly lower than they should have been but it was nothing they were too concerned with. Now I have blood tests prior to my quarterly dermatology follow-up appointments and my dermatologist is always satisfied with the results of my blood tests. So far, so good.

I have had erythema nodosum since 1981, at the age of 30. They did every test possible and there was nothing that they could find that caused it. Some outbreaks are worse than others. When it is really bad it affects my legs, (upper and lower), my upper arms, across my chest, along my abdomen and groin. It lasts several months. Extremely painful. One doctor said I needed vitamin e. Another put me on 600mg of Motrin, Nothing helped. I am having an outbreak now and my joints are starting to be affected.

I'm 46 and I believe this is my 6th episode of EN. I've been on pain meds, steroids and have had punch biopsies during the first few episodes before they finally diagnosed me. But, mine are mostly on my thighs and just a couple below my knees. They are really bad on the back of my forearms. You never how many times you rest the back of your arms against something - painful! The headaches are just as bad. They can't seem to tell me why I continue to have them - one MD told me it shouldn't recur...but I've tested negative for any of the major underlying diseases that may be the case.