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What is longest outbreak of erythema nodosum you have had?

Posted , 6 users are following.

ak52
ak52

I have had EN for 5.5 months and it has gotten worse. I haven’t had 1 day without nodules. What is the longest outbreak you have had?  

0 likes, 9 replies

9 Replies

  • leslie22232
    leslie22232 ak52

    Posted

    I was just diagnosed in November. Everything started in beginning of October. I have not had any new nodules for 2 weeks. They are mainly on my hands, but reduced greatly in size. I have been on prednisone and hope to go off when I see my dr this week. I hope you get some relief soon.
    • ak52
      ak52 leslie22232

      Posted

      Thank you for your response. I hope you get relief soon too. I took prednisone for 2 weeks in early oct (my first bump popped up early Aug) and the bumps decreased in size and pain but came back toward the end of the 2 weeks course.  It’s frustrating. 
    • Lanae11
      Lanae11 ak52

      Posted

      Hello there. I was diagnosed with EN about 13 years ago when I was pregnant with my daughter. After delivery it went away and I didn’t have a recurrence of it for 10 years. Then suddenly I had 6 spots on one leg. I started researching reading everything I could find. I refused to start taking prednisone in such high doses as my doctor wanted. Found that pro biotics helped some people so I figured I’d try. Within a month they were gone. Last month I ran out of my normal probiotics and I was waiting till end of month to get a new bottle ( sale of them started wanted to save a few dollars) I’ll never go without again. I now have 3 spots on my leg.  Bottom line the probiotics for me have kept my body free erythema nodusom. I have also went back over my journals from years ago and another thing that would occur during flair ups was that I was usually constipated. (During my pregnancy I began a journal making small entry’s as to how my body felt each day and any new issues as to try to figure out why my body was reacting in the ways it did ) usually I was fine but the days I wasn’t I’d make a small a note. It now is so helpful when I can look back and have reference. 

      Bottom line it has to be something to do with our gut health. 

      Please do your on probiotics and skin health and I’m sure you will be enlightened. 

      Take care and I do hope you get better

  • megan42421
    megan42421 ak52

    Posted

    I was diagnosed with EN at the age of 16. I am currently 33 years old. It started where I would have an outbreak every 2-3 years in the fall and spring. A small steroid pack would clear them up instantly. I'm at the point now where I have had EN for 3 years straight and the only relief is being on high doses of steroids. Once I try to wean off the steroids the EN returns. I have went to so many doctors and spealists like a Rheumotologist an. a Dermatogist. Blood test after blood test. No one can find the reason why my body is doing this. It has gotten to the point where it covers my feet, legs, thighs, butt and arms. Multiple nodules that eventually join into one large nodule. The pain is terrible from not being able to walk to constantly living with flu like symptoms and a low grade fever. I have to take several hot baths through out the day to help with my chills. My PCP wants to send me to a research institute like the Mayo Clinic hoping they can find an answer. I hope you find relief and that you don't suffer from this for as long as I have. That you can find a physician that is willing to work with you and not settle for an answer of I don't know. Right now my PCP is my saving grace. These other physicians have no beside manners and they just want to charge you for a 300.00 visit. 

    • ak52
      ak52 megan42421

      Posted

      Bless your heart.  I am sorry you are going through this.  This is a personal question, but do you have breast implants by chance?  The reason why I am asking is after continually searching for an answer, I saw a random fb post about 2 women removing their implants. Super long story short, I learned about "Breast Implant Illness" and at this point can't exclude they might be behind some, if not all of this.  I am scheduled to explant in May.  

    • megan42421
      megan42421 ak52

      Posted

      No, I don't. I have been searching for an answer for 17 years. Its hard to pin point one and when you think that's the one usually you have a physician behind you saying thats not the reason. 

    • d01570
      d01570 ak52

      Posted

      Hi - I have been searching for info about Breast Implant Illness and connections to EN. I see that you were due to have an explant done in May - how did it go...have you noticed your symptoms healed? I am wondering if my fatigue, declining eye sight, and 2nd case of EN in 4 years have to do with my implants. I would really appreciate hearing about your results. Thanks kindly!
    • ak52
      ak52 d01570

      Posted

      Hi, I’m sorry you are dealing with EN and all of the other stuff too. I explanted May 9th and am so thankful to have that part behind me. What I’m learning is detoxing this crap out of your body is no joke. I’m a chiropractor so I started doing what I thought best but I have since decided to have a naturopath guide me through this process. I meet with him next week. I have good days and bad days with the EN but unfortunately it is not gone yet and we are going on almost a year BUT I 100% believe my implants were a huge hindrance to my body having the ability to heal regardless if they are the sole cause of my EN. Please keep me updated on your progress and if you have any questions about the explant let me know. 
  • angie53452
    angie53452 ak52

    Posted

    I have not been diagnosed with EN but I have been fighting nodules and pain for a whole now. When I was pregnant with both kids I had EN (or like symptoms). 5 years later they came back. Ended up on blood thinners for a year. After my 2nd child I had breast implants. When the 5 year mark for EN to happen after kids and a year of blood thinners I got off of birth control. Had my tubes tied. EN went away and came back a year later even worse. Then about every 6 months. I've taken Potassium Iodide and that worked. This time it seems it hasn't worked as well. Going on 5 weeks now with EN. Almost 10 years with breast Implants (silicone). What's weird is I had these nodules, bruising on lower legs while pregnant. Why 5 years later and now is it from breast implants?

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