Erythema Nodusum for 8 weeks

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I'm almost 37 years old and had my second child 7 months ago. 8 weeks ago an unexpected hot, red tender nodule came up on my left leg while on vacation. I watched it a couple of days and then contacted my dr.  He diagnosed it as cellulitis and prescribed bactrim. After a few days on the antibiotic it wasn't better. I had an ultrasound done and it didn't show anything. The same day as the ultrasound is when another nodule appeared on my right shin. I watched it for a couple of weeks until the pain was enough to make me go to the urgent care because we were getting ready to leave on a 10 day vacation. I actually thought I had cellulitis then. When I met with the urgent care dr she diagnosed me with EN. I had a chest x ray, CBC with diff, strep titre, ANCA, C3/C4 complements, ANA, ESR and CRP. With the exception of slightly low C3, all was normal. I was scheduled to see a rheumatologist but when she reviewed my blood work she cancelled the appointment because she doesn't think I have anything connective tissue going on, which was good news but still left me with no answers. I then met with my Dermatologist. She didn't want to biopsy because of the location and the scar it would leave but recommended I take Aleve 2x/day for 2 weeks and then follow up.  The aleve did help with the pain but I then developed 2 new modules. On my follow up she ordered a blood test for sarcoidosis, mycoplasma pneumonia and TB.  All were negative. She still didn't biopsy but feels very confident it's EN.  She also prescribed 2 weeks of prednisone. After a week of being stubborn I finally started taking it this morning.  My nodules will seem to be getting better one day and then the next they are flared up again.  I have had bouts of just feeling achy in my back and really tired throughout all of this. It's like one day I feel like I can conquer it all and then the next I feel like crap. I am very sleep deprived with my baby who still wakes multiple times each night to nurse which doesn't help. The nodules are painful to the touch.  I hate complaining to my husband about it but after awhile it starts to affect me emotionally too.  I am a chiropractor so my family tries the natural approach so I have taken more supplements than I can type and continue to daily. I've gone to my acupuncturist, used a lymphatic drainage machine, had a live blood analysis, iridologist, regular adjustments, very minimal sugar intake, juices, green smoothies, epsom salt baths, essential oils, heat/cool packs and the list goes on. I don't take birth control and haven't for 10 years. When I look back, during both of my pregnancies I experienced symptoms of EN but no doctor could ever figure out why my legs hurt with joint swelling and pain and it eventually went away.  Needless to say I'm frustrated as I'm sure everyone that has had this is and it can be consuming most days.  I still don't have answers. Has anyone taken the steroids and they never came back?  Has anyone never found the cause of their EN?  Does anyone have anything natural they have tried that worked for them?  Does anyone think stress caused their EN?  Any advice would be appreciated. TIA. 

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11 Replies

  • Posted

    Hi Ak52, 

    I'm sorry you're having such a horrible time.  

    I first experienced EN within weeks of having my second daughter 13 years ago.  I was later told there is a strong link between EN and pregnancy. There is increasing interest in the hormonal effects of soy and soy isoflavone consumption in both men and women and I know for certain that soy triggers my EN and have read of other people who experience the same.  Worth reading up on anyway?  I hope you feel better soon. It's no fun. 

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    • Posted

      Thank you for the response. I have not heard of soy being a trigger but it definitely makes since with the estrogen acting as a trigger. I am going to start paying close attention to that and see if it makes a difference.  Thanks again. 
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    • Posted

      Hello, 

      Did I read that you have had EN for 13 years or you had it 13 years ago? I was hoping you did not experience it coming back once finally gone? 

      Thank you!

      Kim

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  • Posted

    Hello!

    I'm so sorry to hear that you are going through this! I was diagnosed with EN in April & it lasted until about September, meaning all of the joint pain finally left! I did so much reasearch, visited any Dr that would see me & had so many frustrations the entire time! I had a neck adjustment that left me with horrible pain & I needed to take Advil twice a day to limit the pain! My dermatologist let me know that my body was probably having an allergic reaction to Advil & to stop immediately as NSAID's can cause EN. The toxins released into my body along w the Advil & some stress is what we assume caused it! Once I stopped the Advil & got on prednisone, not wanting it, for about 3 weeks, I finally was better. The joint pain in my knee is what was the worst & lasted the longest. I know it was the Advil as I started to get better the first time I took prednisone & when I stopped it, I had joint pain & started Advil again & was so much worse! I took it first fir 3 days the first time & prior to knowing it was Advil causing it. From all of this I developed leaky gut & now candida that I'm trying to heal! I too believe in the lost natural route & hated taking prednisone but it's what my body needed to help heal the inflammation! I eliminated all inflammatory foods & once I found a holistic Dr to work w I started glutamine, vitamin c, turmeric & those helped also! I hope this helps you & you heal quickly! Pregnancy can definitely cause EN also butvyou may want to stop the Aleve! Good luck! 

    Xo

    Kim

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  • Posted

    Hello,

    I've tried to respond to you but for some reason my message is pending. If you are free I'd love to talk to you about my experience? 

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    • Posted

      I'll try to type it again...it was just a long response! I developed EN in late March & was diagnosed about 3 weeks in. It was awful! I had a neck adjustment that left me in a lot of pain so I began taking Advil about twice a day. About a week or 2 in, I started getting pain in my hip, foot, knee & ankle & had no idea what was going on! Then nodules began showing up. I did my own research to see what I had & 2 Dr's confirmed it was EN. My dermatologist saved me when she asked if I was taking NSAID's & believed I was having an allergic reaction to it! I needed to stop immediately & got on prednisone not wanting to as I had tried under a different Dr's care for 3 days before that. It helped but when I went off everything came back so much worse especially once I added Advil back because of the joint pain. The dermatologist put me back in prednisone this time for 3 weeks, ugh! I hated taking it but it was what my body needed to help heal the inflammation! 

      I began working w a holistic practitioner who believed I had developed leaky gut from all of this & put me on glutamine, vitamin c, turmeric & I had to change my diet! Unfortunately, the symptoms of EN stuck around for 5 months but I'm all better now, thank God!! Praying it never comes back!! So far so good! I believe in the all natural way as well but I needed something to jump start the healing! Hope this helps! 

      Xo

      Kim

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  • Posted

    Hello,

    I'm hoping this message comes through as I've tried to respond twice with no luck.  I was diagnosed with EN in April of this year and it lasted about 5 months...the lumps did go away as well as the flu like symptoms, but the joint pain in my knee lasted the longest.  My dermatologist believed it was a allergic reaction to Advil that I had been taking for about 2 weeks twice a day for a neck adjustment that left me in pain.  I'm not allergic to Advil, however they believe that the toxins from the adjustment combined with the Advil and some stress I had left me with EN.  I do know through my research that EN can come from pregnancy as well as nsaid's can contribute to the cause...in small print.  I hope this helps and I wish you the best!!

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  • Posted

    I believe you asked about supplements also...my holistic Dr. recommended that I take glutamine, vitamin c, turmeric and rest with my feet up, which all helped  I was on prednisone, not wanting to be for about 3 weeks, titrating down after the first week to help heal.  I too believe in the all natural way of healing however my body needed the jumpstart and only taking prednisone for a couple days helped initially but everything came back worse when I went off and took advil for the pain..  At this point we didn't realized advil was causing it.  From all of this, I developed leaky gut and changed my diet even more to eliminate any inflammatory foods.  Still working to heal my stomach, but doing so much better!!  Good luck and please let me know if you have any questions. xo

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    • Posted

      Thank you so much for all of the info.  I'm sorry you have gone through this too but I'm glad yours finally resolved.    I haven't tried glutamine yet. I'm on day 4 of the prednisone. It's gotten a little better with pain but the nodules are still there. How long did it take for the prednisone to work for you?  I didn't know Advil could be a cause. When it first started I was taking Advil around the clock until the derm told me to switch to aleve. The Advil wasn't doing anything anyway and could have possibly made it worse. The aleve helped with the pain but I've stopped taking it. I'm hoping it's ok to be on the prednisone while I'm still nursing. I'm also hoping it knocks it out and doesn't come back. I'm actually having ultrasound on it right now which I haven't done before. I'll keep you posted. Thank you again. 

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    • Posted

      Hello!

      How are you feeling? The prednisone worked pretty quickly for me but the Dr kept me on it because the first time it worked & I went off, everything came back! I was on a total of 3 weeks. How was your ultrasound? What were they looking fur with that test? Where are you located? Hope you are doing better! 

      Kim

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    • Posted

      Hey! Thank you for following up. Sorry for the delay in responding. I took the prednisone for 2 weeks. Unfortunately they came back.  It’s been 2 weeks since my last dose.  I followed up with my derm the day before my last dose and I could already start to feel one coming up again. So frustrating.  The side effects from the prednisone were hardly worth it, especially since they came back. The ultrasound I had was done back in August. At that time I only had the left leg affected so they wanted to rule out a blood clot since I had just gotten back from a long road trip. Right now I have nodules just below my left knee and mid to lower shin. When I wake in the am they don’t look as bad but as the day progresses I get swelling around the affected area because I’m on my feet a lot so then it just looks like one big nodule instead of multiple in one area. I really don’t want to do prednisone again. I was having bad headaches while I was on it. Since being off the steroids I have not taken anything for the pain outside of my supplements but I’ve come close because it’s been very painful. I sent a urine and stool sample to dr. D’Angelo our of Colorado.  It’s called parawellness research.  He is one of the gurus in detecting parasites. I got my results last night and I have yeast (which I have known and am working on) but I also have a Protozoa parasite. Gross!  He has rec an extra strength colloidal silver spray which I am going to order tomorrow. I’m wondering if that is playing a role in all of this. I had also come across a research paper of a link between low B12 and Chronic EN. I haven’t had my B12 levels tested but I am doing shots to see if that will help. This has been a journey but I’m trying to be patient. 

      Do you currently have any outbreaks?  When yours is flared up how many nodules did/do you get?  

      I’m in Oklahoma. Where are you located?  

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