I was hospitalized with EN in February of 2009. The pain of the nodules plus the accompanying joint pain was intense. I was treated with very large doses of motrin, which had some effect but not much. Each day (except the 6th and last day) they drew blood, sometimes 14 vials at a time. The end result? No underlying cause was found. (A blessing, to be sure, to know that I was tested for "everything" and found perfectly healthy.) Prior to the appearance of EN I had "flu-like" symptoms and stayed in bed with a high fever (104). Once I was able to get out of bed and to the doctor I was diagnosed with pneumonia and prescribed Ceftin. Thus, my EN is said to have been caused by either the pneumonia or the Ceftin (EN followed start of illness by 9 days, start of Ceftin by 4 days). After two major outbreaks, or flare-ups, I am now in remission, but left with residual joint pain in all my joints. This will, perhaps, leave me in time. Prior to EN I did not have any joint problems or pain whatsoever. As Rebecca said, no medical specialty embraces EN. I was hospitalized by Dermatology, had many consults, and have been followed, to this day, by Rheumatology. One of the most difficult issues regarding EN is not knowing when, or if, it will flare-up again. Patricia Talmage, EN since 2009, in remission now.

I am a 50 yo woman who was dx'd in 5-07 with en. I first noticed something was wrong in 8-06 when I became very tired on vacation, with swollen ankles. It was in 2-07 that I became so terribly exhausted that I had trouble getting enough sleep after 16 hours of sleeping. I would somehow be able to make it to work, stand for 6-7 hours on cement. After I was off, to the car and asleep as my husband would drive me. Once we got home about 55 minutes later, he could not wake me up enough for me to get up and into house. When I did, I made it to the couch, and passed out again. I would not get up to eat, or go to bed. I spent many nights on the couch downstairs. This same story played for about 2 weeks. I was so cold, but nothing could warm me up. Then I noticed lumps with bruising on my legs, first on one, then the other in almost the same spots. Another 2 months later, I began having them on my arms. Now I am scared! I called my daughter, who drove me to the drs on a Sunday. I didn't know how lucky I was until years later. My doctor came in and rolled up these words out of his mouth...erythema nodosum. I could not understand him. What? Again he repeated himself, as did I. He finally told me to wait right there and in he came with a medical book with a picture of it. The word I had trouble understanding, is now so easy for me to say, spell. There are so many people out there who have no idea of what they have. Doctors who have no clue, patients who go from dr. to dr. trying to find out what is wrong with them...The aches, fever, chills, lumps and tiredness. I was so lucky to come across Rebecca's online support group. I now know I am not alone, which in nice to know. But knowing that others out there are struggling, just to be dx'd, is heartbreaking. I have learned in the mean time to rest when I feel worn out, or feel the chills coming on. I will not be how I was back in 07, at least I hope not. We really need the funding to get this research off the ground. We are listed under NORD...National Org for Rare Disorders. How many others have this, suffering on their own, as I did in the beginning? Rebecca has had this for many years, and this is her first remission. She is the one who I'd really like to see helped. She has put so much energy into finding a 'cure' or atleast to get it dx'd much quicker, and to find the trigger. But, helping her is helping us all. Thank you for reading this and I hope you can help. By the way, there are variations of this that are much worse, such as PG which become ulcers and em (I believe) Please reread Rebecca's story again on EN. Again thatnk you. Debbie

I have had EN for 8 years and I'm a 67 year old female. I don't have kind of bowel disease. I was lucky to be diagnosed as my doctor had never seen a case. Another doctor happened to see it at the clinic and he was able to tell us what to do. Finally found a partial solution, injection of small amounts of cortisone under the skin sometimes works. Often the inflammation spreads and become diffuse and then there isn't much I can do except wait for it to burn itself out. I have taken prednizone in the past with all the accompanying side effects. It does help but the cure is almost worse than the disease. I always have some red spots and inflammation, but it is not affecting any joints so I am not bothering with treatment. It would be nice if it could be covered briefly along with some other rare diseases.

I suffered from this disease as a side effect of IBD. The pain is terrible and as mentioned in the synopsis, there really is no good treatment. My legs were painful to the touch - even pantlegs were excruiciating - after a long treatment of steriods, the nodules broke open. Again, extreme pain. Please support research to help those suffering fromt this disease.

Almost three years ago, my daughter, than 20 years old had EN. At first the general practitioner, did not recognized the disease. After consulting a friend who is a dermatologist we found out that it was EN. She suffers for more than two months. For two weeks it was very painful, she was not able to walk to the bathroom, just 5 steps away and we had to carry her. What surprised me is that there is very little research done regarding EN, because it is in general not live threatening and it is not commercial interesting for the pharmaceutical industry due to the small number of patients.

EN is a very worthy topic for The Doctors. I have had severe and very painful cases of EN twice -- both times following strep throat and needed to be hospitalized. The first time, the red bumps on my legs appeared about 3 days after the strep throat. The pain was so bad, especially after putting my feet down on the floor after being in bed, I literally had to crawl around instead of walking. I was placed on prednisone, which made the swelling go down, but my legs were black and blue for months. I also had joint (mostly hip) pain for about 6 months afterward. The second time I had strep throat, about 10 years after the first time, I never imagined that I would have erythema nodosum again, but sure enough, about 4 days after the strep infection, a little bump appeared on my shin -- then another, then another, until I had 35 red, excruciatingly painful nodules all over my legs. When I went to the Dr. this time around, they said it was the worst case they had ever seen and immediately admitted me to the hospital. After high doses of ibuprofen failed to alleviate the pain, I was again put on prednisone, which worked wonderfully at reducing the painful swelling. Again, I had massive bruising all over my legs and had the joint pain for about 6 months. It's been about 6 years since the last time I had EN and anytime I hear that someone has strep throat -- I stay far, far away!

My daughter who is 14 was diagnosed with this condition around 2007 she always has a minimum of three to four lumps constantly ever sinse and has had as many lumps as sixteen or so . She had a biopsy which suggested an immune problem in the subcontainious layers beneath the skin. I really wish more was known about this condition which i was initially told would pass however this has not been the case. MORE RESEARCH PLEASE Helen

I was fortunate enough to only have this debilitating and painful illness for a few weeks; I believe it was brought on as a reaction to a flu vaccine. I really feel for those of you who have had had to suffer with it for years and I pray that some proper valid research will be carried out involving human volunteers who caught the disease naturally rather than expecting to get sensible results from animals who have had it inflicted on them artificially or we will be waiting for a cure forever.

Here is the Official list of EN Triggers, and there are many more caused by specific medications: http://dermatology.cdlib.org/DOJvol8num1/reviews/enodosum/requena.html 1. Infections * Bacterial infections: * Atypical mycobacterial infections27 * Borrelia burgdorferi infections28 * Boutonneuse fever29 * Brucellosis30 * Campylobacter infections31 * Cat-scratch disease32 * Chancroid27 * Chlamydia psittaci infections33 * Corynebacterium diphteriae infections27 * Escherichia coli infections10 * Gonorrhea34 * Leptospirosis35 * Lymphogranuloma venereum36 * Meningococcemia37 * Moraxella catarrhalis infections38 * Mycoplasma pneumoniae infections39 * Pasteurella pseudotuberculosis infections40 * Propionibacterium acnes41 * Pseudomona aeruginosa infections42 * Q fever43 * Salmonella infections44 * Shigella infections45 * Streptococcal infections46 * Syphilis47 * Tuberculosis48 * Tularemia49 * Yersinia infections50 * Viral infections: * Cytomegalovirus infections51 * Hepatitis B52 * Hepatitis C53 * Herpes simplex27 * HIV infection54 * Infectious mononucleosis55 * Measles56 * Milker’s nodules57 * Orf56 * Parvovirus B19 infections58 * Varicella59 * Fungal infections: * Aspergillosis60 * Blastomycosis61 * Coccidioidomycosis62 * Dermatophytes63 * Histoplasmosis64 * Sporotrichosis27 * Protozoal infections: Amebiasis65 * Ancylostomiasis27 * Ascariasis66 * Giardiasis65 * Hydatidosis67 * Hookworm infestation27 * Sparganum larva68 * Toxoplasmosis69 * Trichomoniasis70 2.- Drugs * Acetaminophen71 * Actinomycin-D71 * All-trans retinoic acid72 * Aminopyrine27 * Amiodarone71 * Amoxicillin10 * Ampicillin10 * Antimony27 * Arsphenamine34 * Azathioprine71 * Bromides73 * Busulfan71 * Carbamazepine71 * Carbenicillin71 * Cefdinir71 * Chlordiazepoxide71 * Chlorotrianisene71 * Chlorpropamide71 * Ciprofloxacin71 * Clomiphene71 * Codeine71 * Cotrimoxazole71 * D-penicillamine74 * Dapsone71 * Diclofenac71 * Dicloxacillin71 * Diethylstilbestrol71 * Disopyramide71 * Echinacea herbal therapy75 * Enoxacin71 * Erythromycin10 * Estrogens71 * Fluoxetine71 * Furosemide71 * Glucagon71 * Gold salts76 * Granulocyte colony-stimulating factor71 * Hepatitis B vaccine77 * Hydralazine71 * Ibuprofen71 * Indomethacin71 * Interleukin-278 * Iodides73 * Isotretinoin79 * Leukotriene modifying agents (zileuton and rafirlukast)80 * Levofloxacin71 * Meclofenamate71 * Medroxyprogesterone71 * Meprobamate71 * Mesalamine71 * Methicillin71 * Methimazole71 * Methyldopa71 * Mezlozillin71 * Minocycline81 * Naproxen71 * Nifedipine71 * Nitrofurantoin27 * Ofloxacin71 * Omeprazole82 * Oral contraceptives83 * Oxacillin71 * Paroxetine71 * Penicillin77 * Phenylbutazone60 * Phenytoin57 * Piperacillin71 * Progestins71 * Propylthiouracil84 * Pyritinol34 * Sparfloxacin71 * Streptomycin71 * Sulfamethoxazole71 * Sulfixoxazole71 * Sulfonamides85 * Sulfosalazine71 * Thalidomide86 * Ticarcilin71 * Trimethoprim87 * Typhoid vaccination88 * Verapamil71 3. Malignant diseases * Adenocarcinoma of the colon89 * Carcinoma of the uterine cervix90 * Hodgkin’s disease91 * Leukemia92 * Non-Hodgkin’s lymphoma93 * Pancreatic carcinoma94 * Post-radiotherapy for pelvic carcinoma8 * Renal carcinoma78 * Sarcoma34 * Stomach cancer10 4. Miscellaneous conditions * Acne fulminans95 * Adul Still’s disease96 * Ankylosing spondylitis97 * Antiphospolipid antibodies syndrome98 * Behçet’s syndrome99 * Berger’s disease100 * Chronic active hepatitis101 * Coeliac disease102 * Colon diverticulosis34 * Crohn’s disease103 * Diverticulitis104 * Granulomatous mastitis105 * IgA nephropathy106 * Jellyfish sting107 * Lupus erythematosus108 * Pregnancy109 * Radiotherapy110 * Recurrent polychondritis111 * Reiter’s syndrome112 * Rheumatoid arthritis113 * Sarcoidosis114 * Sjögren’s syndrome115 * Smoke inhalation in a house fire116 * Sweet’s syndrome117 * Systemic lupus erythematosus-like syndrome due to C4 deficiency118 * Takayasu’s arteritis119 * Ulcerative colitis120 * Vogt-Koyanagi disease115 * Wegener’s granulomatosis121 This is why it is so difficult to test for all the possible causes of EN. And still, as many as half of all EN sufferers never find their trigger. Instead they have flares and remissions throughout their lives with interferes with their ability to work and live a productive live. We need to have some kind of publicity so we can get the research we need. Doctors can not help us if there is no research to give them answers. Rebecca Strecker idiopathic EN for 41 years. In remission now.

I have been suffering from this for a few years now - everything sttles down and then just re occurs, no idea why. Its so painful and no one knows how bad or painful it is until you have had it. No one really knows anything about it. Its thanks to Rebecca that I found out enough information to try and understand what I have. Still dont know trigger and still work my way through it. Just getting over it again now.

I have had idiopathic erythema nodosum since the birth of my 2nd child who is now 8 1/2 years old. Been to many doctors, had many tests done, no cause has been found. I currently get a bout of nodules about every 9 months accompanied with fever, lethargy, and am bed ridden for about a week, and take heavy doses of Ibuprofen for little relief.

I have been batteling Idiopathic Erythema Nodosum for 15 years. The most frustrating thing about the disease is being being ping-ponged back and forth between specialist. Iv'e seen a Rheumatologist, Allergist, and Dermatologist. I"ve been x-rayed, Biopsied, and felt like Dracula's sacrifice. The cause has never been discovered. I had my worst flare in 2004, in which I had nodule on my hands, arms, legs, buttocks, and on on my face. I was put on prednisone which worked, but due to the weight gain, I was switched to SSKI. During this flare I was in the most excrutiating pain, that traveled. Sometimes my feet hurt, my Achilles hurt, I could barely walk. My hands and wrists hurt. The most insulting situation that arose from this was when I would see the physicians, my condition was dismissed as Fybromalgia. Over the last year the pain has started once again, with an occasion node here and there, however, my scalp presented with these crazy looking sores/leasions which refuse to heal, I lost my hair in these areas. All of my blood test for auto-immune diseases are negative. My new rheumatolgist has diagnosed me with psoriatic arthritis. I wonder how these two diseases are linked?

Ive just started struggling with EN since July 2010! It started out as a dime size nodule on left shin then two n three that grew to about a quarter size. After weeks, doctors appt etc, i have had approx. 10-15 different ones each getting bigger and also a egg sized one on my right knee. I havent been sick, stressed etc.... All my labs etc have come back within normal limits etc. chest xray, echocardiogram everything is fine. At first i felt like ok something i have to deal and it will go away...now i acctually feel like its never gonna go away. Im waiting to see a surgeon to do a biopsy. Its getting to a point that its painful to be on my feet for very long. Too much of a pressure feeling. I have been able to relax these past few days but honestly i dont see much a difference. I read ice pack and elevating helps...i have done that ..not sure its working. I take Advil twice a day. I have read many stories of people suffering for years and i am starting to feel defeated. Its hard for me to wrap my brain around suffering wth this illness (almost leaving me bed ridden) when the rest of me feels fine and the test results show im healthy.